Tag Archives: family

The Loving Enchantress of Family

‘There where the waves spray
The feet of solitary reefs…
A loving enchantress
Gave me her talisman.
She told me with tenderness:
You must not lose it,
Its power is infallible,
Love gave it to you.’
Alexander Pushkin, ‘The Talisman’

Let’s be fair, to use a quote from a Russian author of great repute is a little bit pompous but even if it is, in this case I think it describes beautifully to me the subject of this week’s blog. I came across this additional quote recently that also made me think about the same subject and it too sums up my feelings nicely.

‘Now and again in these parts, you come across people so remarkable that, no matter how much time has passed since you met them, it is impossible to recall them without your heart trembling.’
Nikolai Leskov, ‘Lady Macbeth of Mtsenski’

Those who know me well, won’t be overly surprised to see me quoting Russian authors. While not a fanatic, I have always been drawn to the power and drama of Russian writers. I love the intrigue and power plays, especially in the pre-Russian revolution era. I am however not about to go down the route of discussing Russian literature. This is a skill that far exceeds my limited talents.

No, these quotes reminded me of something perhaps far mundane than Russian literature although for me something far more real and far more important. These quotes brought to mind the power and love of my extended family; common parlance calls us, ‘The Hogans’.

Alandi Anette 15 May-1-83Reality is that we are far from ‘The Hogans’ that once existed when the last of the modern core Hogan family was born in 1948 (my mother as it happens). We are the Hogan clan yet so many of us are a generation if not even two generations away from the original Hogan title. Some of us may not even share the blood of the Hogans but through upbringing and shared experiences are as very much a Hogan as anybody else. For we are Ironsides, Lydons, McDonalds, McCarthneys, O’Sheas, Donaldsons, Farrellys, Healys, Gallaghers, Scanlons, Bantins, Mathers, Buckleys, Warrens, Carrolls and probably many more that I cannot keep track of. What unites us all though is the strength of identity and indeed the strength of personality of twelve brothers and sisters. For us first cousins, these aunts and uncles; mothers or fathers are the originals – the very heart and soul of the Hogan clan.

The Hogans had always played a key role in my life: my summers were spent with cousins Alice, Brid and Una. Alice was also there for some of my first alcohol experiences as I was there for hers (least said about that the better!). My adolescent years were spent with my Aunty Mai winding me up and my cousin, Kathy (her daughter) happily helping her. My Aunty Ann would take me swimming in the rivers near their house while Uncle Vinny took me out on the family farm and showed me how to herd cattle. I still use the breathing method cousin Clare thought me one summer so I could swim further under water. Uncle Frank and Aunty Marie along with their daughter, Roisin, gave me my first experience of spending time with someone with a disability and seeing how disability makes you no different than you would be different without the disability.

Later, Aunty Robin in England with her husband Brian, provided me with a respite from London when things got very hard. They were my escape, they gave me the ability to call them on a Friday night and say, ‘is it ok if I come on the next train?’ Their daughter Maureen allowed me be her bridesmaid, terrifyingly about 30 years ago. Uncle Don, the history professor, helped me prepare for my final history exams in school. My cousin Carol in England, gave me the chance to spend time her in her school before my teacher training interview so at least I could pretend I knew something about the English education system. I could go on. We are family that supports each other (while of course being busy winding each other up and talking very loudly at each other!).

For many years, I didn’t value the Hogan family. I loved spending time with them but I didn’t recognise just how important having a family identity was. I didn’t see just how lucky I was to have such a powerful strong group behind me who would support me through to the ends of time; through arguments and laughter, this group would always be there for each other.

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my husband, Chris with our nephew and our little cousin.
My husband, also comes from a very strong family, one with an extremely strong family identity. He opened my eyes up to this power. From day one, he made it clear that in his family, family supported each other no matter what. You may have had a major falling out with someone the day before but if they needed you, you dropped everything and went to help them. His policy has always been that family comes first, that you value whatever moments you can spend with family. Living outside of Ireland, striking the balance between family life and simply life is hard. Chris pushed me to go home more often and never questioned whether we would attend family weddings, funerals or parties. If they were happening and we could find the money to pay for it, then we were going.

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Uncle Joe with our cousin, Niamh
Consequently, I found myself at my Uncle Joe’s 80th birthday party in 2013 in a small town in Ireland called Portlaoise. This is the family base, where the family has been for very many generations and where many of the aunts and uncles have returned to in retirement. Joe had lived for many years in New York and in typical Hogan style had been a tower of strength and support for all the cousins who ventured to the states for work or even just for holidays. All who saw him there returned with stories of his kindness and generosity. It was no surprise therefore that his birthday saw a significant turn out of cousins and all the aunts and uncles. Motivation to attend was also Uncle Martin. Martin was sadly ill with cancer at the time.

 

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cousin, Liam. I may or may not have forgiven him for the nightclub.
This was perhaps the first occasion where most of the cousins in attendance were now adults. Now, I have only vague memories from that very dodgy night club my cousin Liam brought me to the night perhaps I need to black them out for my own sanity! It may have reminded me of my teenage years in some of the rural clubs I used to attend but it was so much fun. Surrounded by my cousins, drinking, laughing and dancing. What could be better?

 

For me the night was a turning point in my understanding of the importance of the Hogan clan. A sad reality was suddenly made clear: Joe was now 80 and my oldest uncle, Uncle Liam was now 87. Martin at 82 had cancer. How much longer could the aunties and uncles be the focal point around which the family pivoted? What would happen when that pivot point no longer was there? What would happen to the strong family unit that was created the day the eldest sibling, Uncle Liam, was born in 1926?

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Uncle Martin
Just three months later Uncle Martin died of colon cancer. He was the first of the 12 brothers and sisters to pass. For all of us it was a heartbreaking moment. Even today, writing this I can’t help but shed a tear. Martin was always adored by us cousins and the memory of his funeral mass trying to comfort my cousin, Brid, when I too was in bits will always stay in my mind. His funeral however cemented the need for us cousins to be proactive about sustaining our relationship in the long term. A week earlier Uncle Denis (our Aunty Brid’s husband) had also died further demonstrating the temporary nature of family and in this case the siblings. The family having attend two funerals over the course of 8 days, led Uncle Don (Peggy’s husband) to comment, ‘Right then, see you all next Monday or maybe I won’t.’ Dark comedy not untypical of Don!

 

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The picture is out of focus but still love it as it is 30 cousins together!
Martin’s funeral was the biggest gathering of cousins ever with 30 first and second cousins. That next morning, I went home and befriended every single cousin I could find on Facebook and I have continued to do so ever since. Consequently, I have from the side lines begun to know what my extended family are doing with their lives. We have a much easier way of contacting each other than dependence on our parents.

 

Now we find our aunties and uncles reduced from 12 to just 9 with Uncle Liam passing on in 2014, Aunty Brid and Aunty Ann (Uncle Vinny’s wife) in 2014.

The family continues to age and but also to grow. Aunty Robin likes a party. Any excuse really. So turning 80 needed a party! Despite moving to London in the early 1950s, she has always been the one with contact with all of the siblings and indeed a lot of the cousins. If you need a message passed to the family, get it to Robin and your work can be considered complete! This family centred focus required therefore her party to be in Ireland! When her daughter, Maureen, pushed her to focus on exactly who was going to the party she declared, ‘Everyone!’. Robin had sent out an open invitation to every Hogan relative not matter how distantly related.

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27 out of the 38 cousins

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47 or so of the first and second cousins. Biggest gathering of cousins ever
Consequently, all her remaining brothers and sisters and their spouses; 27 (of the 38) first cousins; and a further 20 second cousins took up the call. Cousins came from Australia, the UK and us from India. Us Hogans aren’t exactly the quietest bunch in the world so you can imagine the chaos that reigned. Tradition continued and at 4 a.m. I went to bed dragging my reluctant 73 year old Uncle Frank with me! Let’s be fair the only reason the cousins and Uncle Frank ended the sing song was the residents bar refused to serve us. Apparently, 4 a.m. was the breaking point for staff that had been dealing with the Hogan madness for two days.

 

These links will probably only work if you are a member of the Hogan Facebook group. Working on a way to upload them to YouTube and will replace these links when I do.

The traditional start to a Hogan sing song – trying to convince Uncle Frank to sing – while he claims – oh no he couldn’t!

Jon’s first solo song at a Hogan Sing Song – he has sung in national choirs for years though.

Cousin Brid – now she is Uncle Frank’s daughter so no surprise she leads a song

Connor on the harmonica!

The New Aglish Hogan’s in full swing

Una leads the sing song

Very English barber shop, totally at home in our very open family environment. These three are professional or near professional musicians

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Aunty Mai – now the eldest sibling.
Once again, I was struck by just how important family is and sadly just how important it is for us, the next generations of Hogans, to take up the mantle of ensuring that when the older generation is no longer there to provide reasons for us to gather, that we gather anyhow. As a start we now have a Facebook group, Hogan Madness with over 47 members, mainly cousins. We hope this will help us to sustain a relationship that does not pivot around the siblings.

On the other hand maybe the next gathering is still in the hands of the older lot. I believe I heard Aunty Mai declare that, ‘wasn’t the party just great, I think I’ll do this for my 90th next year!’ Kathy and Denis, enjoy the preparations!! Put Chris and I on the guest list because nothing would stop us from being there.

 

Feel free to like or share this or any of my posts. I would also love to hear what you think and would love if you could drop a comment below also. 

I Don’t Think I’m Ready But Perhaps I Should Anyhow

This blog was first written about 18 months ago. I was too embarrassed to post it – too embarrassed to admit I wasn’t strong enough to cope. Since then, I regularly come across it, read it and instead of thinking why was I such an idiot about the whole thing? Why was I too embarrassed to post it? I continue to feel embarrassed – its ridiculous! 

So I have decided to be brave and post this blog. It is well out of date but I don’t think it matters. Perhaps somebody who is having a similar psychological fight as I had will read it and feel that they are not alone. Maybe they will see the ridiculousness in not talking about it and actually speak to somebody! 

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I’m doing something that only one person vaguely knows about – at least they are slightly aware of its existence but they don’t actually know I have started to use it. Not even my husband knows about its existence, never mind the fact that I actually have started to use it. This goes against everything that I have tried to maintain since I first got ill. Since I first got ill, I have always said that being open about what was going on, in particular with my husband, was absolutely key. Not being open might lead to distrust and misunderstandings. I have always argued that it was wrong to do anything that might encourage that feeling.

So what am I doing that is so awful I can’t even tell my husband? What is it that I am feeling so unsure of, perhaps even so stupid for doing it that I can’t tell my husband? I do not understand what makes me feel so embarrassed, I do not understand why I don’t want to share what I am doing with anyone. So what am I doing?

While we were on holidays and I had a relapse, one day we walked back from the restaurant and I clung to my husband’s arm, desperate for his support and to help me balance. It dawned on me that day that if I could find something that would help me maintain my energy levels and support me when I was having a bad day, then that surely would be a good thing.

So what have I invested in? I have invested in a walking stick.

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And look just how fun it is! And its my favourite colour!

The fact that it took me three paragraphs to get to the point says it all. I am not sure I am ready to use a walking stick, walking sticks are for old people or invalids – I am not old and I do not feel like an invalid therefore surely that means I do not need one. I am embarrassed at the thought of using it and I am embarrassed at the thought of being seen with it. Does using one mean I have given in – once again – to this illness?

You could, very rightly, argue that if I am using it to walk further on a bad day then it is assisting me in doing more than I should. If I could exercise myself better then yes, using it on a bad day would surely little by little assist me in improving my health. I cannot however exercise myself better so surely anything that enables me to do more is just increasing the intensity of my exercise? I think I am just looking for excuses as to why I shouldn’t use it, rather than looking for justifiable reasons why I should.

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True for so much of my illness, definitely not true in this case. Being too embarrassed to discuss my need for a walking stick preventing me using it. This was not me being strong but me being a coward. 

It has only been used twice, having owned it for more than a week I bought a folding one so I could have it in my bag to use should I be out and suddenly get an unexpected collapse of energy. I have   carried it around for a week every time I went out to use in just those circumstances. On Saturday when we walked across a field to get to a nuclear bunker (don’t ask), I was finding the surface hard going and thought just how much my walking stick might help me. There it was just waiting for me in my bag on my back. We were with friends however and I was embarrassed. Embarrassed because my husband had no idea I had it and embarrassed because then my friends might look at me as sick girl. I seriously overdid it on Saturday and as a consequence paid the price on Sunday.

20140318-080008.jpgIf I had used my walking stick for the entire duration of our outing, would I have overdone it so much? Would it have enabled me to use less energy by providing me with support, balance and indeed a method of propulsion. Perhaps, but I was too scared and embarrassed to try it.

This got me thinking. If I was able to reduce my energy requirements on an everyday basis by use of my walking stick, would this enable me to live more of a life? Walk further, do more? Would this be a good thing? Would this just encourage me to do more than I should? However, if I am using the same amount of energy but using it to do more surely that is a good thing? Again am I just looking for reasons to justify not using it and looking for reasons to prove my justification is ever so wrong. Perhaps the latter but I really do not know.

On Monday, still not quite having recovered from my overdoing it on Saturday, I went for a walk. A walk that included my walking stick. I deliberately kept to the back roads embarrassed by my stick. Ashamed to be seen out with it. At least this was my initial feeling. My walk to my usual churchyard seat took no longer than 6 minutes.  By the time I arrived, I was beginning to get the feeling that it was helping me. I should have been more tired by the walk given my energy levels. My legs should have begun to feel more pain but they were no worse than when I left. Was this the benefit of the walking stick or was it simply that I had under-estimated my energy levels and over-estimated my pain levels?

On my return, I walked back a different route, a route that touched the sides of busy roads, a road where there were pedestrians: people to see me and possibly make comments and wonder why a girl in her mid 30s was using a walking stick. I was very aware of everyone who passed, straining to hear them comment amongst themselves about me. Perhaps I was lucky or perhaps people just didn’t notice or care but I did not hear what I strained for. Silence.

Today Tuesday, the next day, I have tried again. This time walking further than yesterday. Again I didn’t struggle or feel my energy diminishing too quickly. This time I was aware as I crossed rocky ground that it was given me support and helping me balance. With my walking stick it was easier than it would have been without!

20140429-094815.jpgI am still a walking stick virgin however. I still hold it wrong at times and have to adjust it. I dropped it crossing the road until I remember to twist its string around my wrist so it wouldn’t fall. At times I don’t quite get the propulsion right and it lands on the ground at an odd angle. I haven’t learnt how to balance it when I sit down. I also haven’t learnt how to accept that it might be useful to me.

 

How can a walking stick be useful to a girl in her mid 30s who can walk for just over a mile (with a break half way)? How can a walking stick be useful to a girl in her mid 30s who doesn’t walk with a limp or need to balance against things? That is unless I am having a bad day.

For me using a walking stick is still a big experiment. Will I continue to use it? I don’t know – I hope I will if it consistently helps me. Will I tell my husband? I guess I have to. What will he think? I don’t know but I know he will at least wear a mask of support. I think he will think that if I am finding it useful then it is a great thing to do. I wonder whether he will find it embarrassing to be seen with me? Could I blame him if he didn’t? Hardly, I am not exactly embarrassment free at all of this, now am I?

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Gillian above (with her own walking stick) – my inspiration while I was sick and a never-ending source of support. She would have given me a right telling off if she had known I had a stick and wasn’t using it!

My friend, Gillian, was the first and only person I have ever discussed using a walking stick with. She uses one herself and even offered to lend me one of hers to try it out. I was embarrassed by the conversation – I think perhaps by the very need to have it in the first place. She was supportive and encouraging. She too was young and understood what it felt like to start to use one – she had started to use hers at 18! Her encouragement enabled me to at least buy one. I would like to think that one day I will be as brave as her and see only the positive reasons for using a walking stick. The negative reasons are surely just a matter of perception.

So I did eventually tell my husband who completely unsurprisingly was utterly supportive of me! 

I didn’t use it all the time but I always had it on me ready to pull out when things got difficult and I used it all day on a bad day. A walking stick categorically helped me! A month or so after I started to use it, I was re-diagnosed and given treatment that enabled me to make rapid improvement – very quickly after this the walking stick was no longer required. 

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In hindsight, I can only wonder why I made such a big deal about using one! Nobody looked at me funny, nobody laughed and in truth I don’t think any strangers actually cared. I should have used the inspiration of Gillian more – she is a girl who just gets on with things and doesn’t allow fear or worry stop her. Perhaps although I am now living in India and while not healthy, a lot healthier, this blog should act as a reminder that sometimes to be strong you need to accept your weaknesses and not let them hold you back.

Challenges: Infuriating But Mainly Exhilarating!

We are heading the way that many, many young Britons have gone in the ‘great’ colonial past. (As an Irish person, I can assure you ‘great’ is most thoroughly in inverted commas!) We are packing our bags and moving to IndiaMapIndia with, I hope, a tad less arrogance and significantly greater tolerance than the colonialists of the past.

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View of the mountains from the pool at VW Marriott, Pune

It is to Pune, three hours South-East of Mumbai, that we are heading. The former capital of the Marathi rulers and the former monsoon holiday destination for colonialists with a love for its ever so slightly cooler mountain climate.

This is a city that has grown over the last 20 years from a city of minor significance to being in the top ten largest Indian cities with a population estimated to be over 6.5m but growing by 100,000s a year.

It has been dubbed (yet another) Indian Silicon Valley, the Oxford of India and the Detroit of India. Western descriptions perhaps intended to show just how modern and developed this city is.

The truth of course is not so clear cut. Certainly, it is a centre for Indian tertiary education. Certainly, it’s IT parks employ 1000s of the Indian educated middle class providing IT services to largely western companies. Certainly, it is home to very many aspirational Indian universities. Most certainly it is home to many, many automobile companies; not the least TATA motors a subsidiary of TATA (which interestingly, through the various concerns it has bought into in the UK, from steel to cars, is UK’s the largest manufacturing employer).  Reality is however that people have flooded into Pune from all over India in the hope of finding a job, any job. Most of these people only experience the very fringes of the wealth such development has brought if any of the wealth at all.

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View from our apartment block to the prestigious Phillipe Starke designed YooPune residential block.

Alongside, the shiny new Trump Towers, the Phillipe Stark’s Yoopune residential building lie those that have not managed to find a way to this prosperity. Be it through poor access to education, caste or sheer bad luck. 32.5% of the population live in a slum. Many of these are illegal (not registered) and lack the basic services such as access to running water and refuse collection.

So yes, along with the prosperity of Pune, alongside its Westernised face will be the more bleak reality of poverty on a scale neither of us have ever experienced.

Our visit to Pune over the Easter holidays showed it to be every bit this strange combination of extreme wealth and extreme poverty. I saw some of the biggest, most extravagant houses of my entire life there and for the first time, I saw slums.  Although, having only just spent one week in Pune, it seemed obvious to me that at night, for example, far fewer people seemed to be sleeping on the streets than in my one and only night time visit to Mumbai – there it was obvious – perhaps in Pune it is just more hidden. Or perhaps, what they say is true, Pune is one of the wealthier of Indian cities, with fewer living in extreme poverty.

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In Pune, building projects are everywhere. If there is a sq milimetre of free land, it will be built on!

Pune is an exciting place. Change is evident everywhere yet no change is also evident everywhere – an oxymoron if there ever was one. The noise of tooting horns (Horn OK Please – across the back of most commercial vehicles); the colour of stunning saris and salwar kameez (a people not afraid of bright colours – thank god); the non-intrusive intrigue of passerbys when they realised that we are white foreigners – everything was invigorating and made me want to move there even more than when I only had a google ‘Pune’ search to rely on. I just can’t wait to get out there on Saturday and begin the process of being able to call it ‘home’.

For three years, our lives are going to be significantly different to how they are today. I hope that we do not find ourselves living in an Expat Bubble, obliviously to the other side of India on our doorstep and possibly even driving our car or cleaning our house.

Everyday is going to be a challenge, everyday I will learn something new either about myself or about India or even possibly both. Challenges will be frustrating, aggravating, infuriating but they will also be thrilling, exhilarating and life enhancing.

Time will only tell but one thing is for certain, we are about to go on an adventure or as Winnie the Pooh would call it – a ‘grand adventure’!

So feel feel to read along, join me and my husband in our ‘grand adventure’. Grow with us as we grow through experience and challenging our status quo. I don’t know about you but I’m looking forward to the ride!

The Half-blood Prince

Last week, one of my amazing students guest blogged on this site. Her poem, about her father who she feels does not care and doesn’t want to spend time with her, got an amazing reaction. More people started following my blog in one day than have ever done; more people liked the blog than any other blog. People posted amazing comments here and on other site1_30032010-07-Julia-Bowman-siblings-at-whitman-webs where it was posted. How amazing that a 12 year old was able to sit back and realise how much people appreciated her words!

Well as promised, here is the second instalment. Also about split families but from a very different perspective. This wonderful student just quietly gets on with school and one would never know the deep thoughts that are inside – thoughts he does not often share. 

The lesson I have learnt from this two-part experiment into giving students the freedom to express whatever is in their heads – is that – perhaps I need to do it more often. Perhaps, young people need to be given the chance to just release everything that is inside in them. We have such high expectations of young people: behaviourally, academically, emotionally – perhaps giving young people the time to vent all the worries and concerns that such expectations bring is not only healthy for them but healthy for us. Giving adults the chance to recognise just how capable young people are but also just how fragile and contrastingly strong they can be. 

My Life As  A Sibling

As many people may know I have a brother and a sister but you may have never known that they were half brother and sister.

Wow I kind of feel awkward about talking about this but I feel that this is a subject I feel that I may need to express more (talk more about than keeping in my thoughts all the time.)

I feel a little lonely to know I have a half brother and sister because they have each other but I don’t really have that interaction with them since we live so far apart. Sometimes (leaves the computer to express feelings a bit) just sometimes I feel that they don’t even exist as a half or actually a brother or sister.

I can’t even believe that I’m actually expressing my real emotion towards this and that’s a lot of confusion and a little bit of frustration. The reason for this… wow I’m sorry but this is a lot for me to say because, because, because I feel like I don’t even exist to them half the time because I rarely see them (which means the life to me sometimes) I still feel that I’m the odd one out or the one that’s different to the others.

Wow I can’t believe I haven’t gone away from the computer yet but I kind of feel proud that I can say, I may not have a brother or sister but at least they are related to me (a half brother and sister). So where I get most emotional is when they come up then they go, I feel that it’s like my favourite thing or toy or person hassiblings_logo_by_rusc_14-d3c7acu drifted away from me and all I think about is that I wish they were still with me but alas that will never happen which makes me so distraught.

I hope that one day, one day that we will be reunited as a full blood family (they will be no longer half but a full brother and a full sister.) Anyway, back to what I really wanted to talk about- how it feels to be the youngest of the 3 and also how my life is an only child almost all the time. Being the youngest of 3 is quite cool but it means that I will be the last to finish school which might be good because my sister said when she finishes school she might give me her revision book which I thought was really nice of her. I’ve sometimes looked up to both my siblings to think wow this is what I’m going to be like some day and how cool it is to have such generous family.

Ok, now I think is best to talk about the real thing I wanted to clarify with everyone out there – my life would never be the same without my brother and sister, sure they aren’t around that much but they care about me and I care about them. I think that this is the thing that matters the most in our little trio. So if I never had my brother and sister to be there for me and encourage me, I don’t think that I would get anywhere and I mean anywhere in life

Please like, share and comment on this blog. Give the brave young man who wrote this the chance to also feel that sense of accomplishment that comes from lots of views, lots of likes and lots of comments. Let’s show him that he too is worthy of people’s time and attention. 

Inspiration Where the Daily Mail Says There’s None

In my last blog, I said I would share some inspirational writing from 12 year olds that I teach. 

Under the new English National Curriculum, introduced this year, a new rather vague requirement is that children should be taught to ‘Write for Pleasure’. Now one has to question the concept that it is possible to teach somebody to write for pleasure. Sure, I can teach them grammar and spelling and extend their vocabulary. Sure, I can introduce them to inspiring authors. Sure, I can give them the space (in a curriculum that doesn’t really lend itself to space!?!?) to give them the time to write. Surely however, it is impossible to teach a child to write for pleasure.

In my attempt to investigate whether this was possible, I set as an experiment a writing task for my middle ability Year 8 students (aged 12 – 13). I told them they could write about anything, in any style, in any format and there were no length restrictions (i.e. it couldn’t be too long or short). I was a little dubious as to what I would receive.

Lesson One then for me is to never underestimate my students. They may still be children but they think deeply. They may still be children but they often crave an outlet for their thoughts; a safe environment where they can say what they like and know they won’t be criticised. Of course, some saw it as a great excuse for scribbling down a few hasty, unthought through lines, knowing full well there was nothing I could do or say to them about it. Most, on the other hand, put all they had into it. The results were heart-warming, heart-breaking, thought provoking, intelligent, wise.

Lesson Two therefore – just because somebody is young – part of the ‘barbaric horde’ (if you believe the Daily Mail) – this doesn’t mean they have nothing to say that is worthwhile listening to. Perhaps if we listened more to young people and less to the jaded politicians or the drama queens of tabloid newspapers, we would realise that young people are a stand up bunch of citizens that should not be tarred with the sam20140719-095038-35438347.jpge brush just because some decide to do stupid things. Would you call me a yob just because somebody 200 miles away (of a similar age) broke into a house? No, so why should we do that to young people.

The poem below was written by a lovely young woman about her difficult relationship with her father who she doesn’t see very often. You could question why these would be on my blog but my blog seems to have become a source of inspiration for many and a source of motivation. The piece of work below and of the student I will publish next week – do just that. For me, they put many of my worries and concerns into perspective. They help me to realise that while things can be difficult, I am lucky to have my wonderful supportive family. I am lucky that I never have to question whether I have their trust and love.

What’s Bothering Me?

Last night I got a text from my dad,

Not often does he text so I knew it was bad.

It contained the harshest thing I had ever seen.

I am cancelling when I am supposed to see you.’

See his children, not too keen,

I cried and I cried,

To all the goodbyes.

Never before had I witnessed this.

He is like an evil snake with a charming kiss.

I saw him last a year ago

Since then we have gone from friend to foe.

For some reason I can’t get over the fact

That his family orientated skills have lacked.

Dealing with this is not easy

Sometimes I just want to be free like a bee.

I carry on reading, reading, reading.

If I was bleeding, if I was needing,

I don’t think he would care.

Some of you may think, aw no

But don’t worry, it’s not rare.

I still wonder why.

But till now all I can do is cry, cry and cry.

Lesson Three Her poem is a reminder to me that in my day to day job, I can provide students such as this with a sense of security and continuity. No matter what happens at home, staff in school / rules in school / behaviour in school will be consistent. I can provide the confidence that no matter how difficult a child might make it for me, I will not back down. I will not refuse to give them my support and my care. In reality of course, no matter what it sometimes seems, no child is deliberately difficult – life has been made difficult for them and they react as they have been shown how to best.

Although not a parent, if I was – I hope this poem would remind me that no matter how difficult things get for me; no matter how challenging my relationship with my child or those in their life get – walking away from my child is probably the wrong thing to do. A child needs to feel love – that is really all they want – they just want to be loved unconditionally. Children can survive abandonment and mistreatment but few survive without battle scars that stay with them the rest of their life.

M.E. patients rightly cry out to their friends and family not to abandon them – young people have a need that is no different.

It would be wonderful to know what you thought of this poem. It would be amazing if the author (a 12 year old girl) could know what you think. How does it make you feel? What does it make you reflect on? What might it make you want to change in your life? 

Please also share this blog. Can you imagine how she will feel if she knows people thought her poem was worthy of being shared by others!??

What Will Happen to Me? Living Life

For the more observant amongst you, you may have noticed that my blog title has changed. It is just subtle but it represents a fundamental change in my life. No longer does it feel appropriate to host a blog entitled, ‘What Will Happen to M.E.?‘ but rather it is now the slightly more appropriate title, ‘What Will Happen to Me?‘ The subtle omission of those two simple dots may pass by unnoticed by some but for me they’re deletion is a cause of great celebration.

In two weeks time, my husband and I will go to spend another weekend with his family: celebrating his father’s birthday. 12 months ago, this very birthday weekend marked the very beginning of my illness. An illness that was to throw myself, my husband and my family into a brand new and unexpected world of uncertainty, pain and fear. The gradual and then sudden disappearance of this world over the last few months is still a source of amazement and at times shock.

Where previously my blog title represented a sense of confusion over my future – a sense of loss, my new title represents an awareness that I am now in a position to do whatever I want. I have no idea what is going to happen now. I have no idea where I will end up living; what I will end up doing.

What drove me in the past, for the moment at least, no longer drives me. I no longer care if I become a headteacher, I no longer care if we live in a fabulous house, I no longer care about my husband’s career progressing as quickly as possible.

Without being melodramatic, in the last year I faced being bed-bound or at best housebound for the rest of my life. It is only by a combination of a miracle and my determination that I no longer face this. However, if I was to face this again, would I care that I’d become a headteacher if it meant that myself and my husband hadn’t spent much time together so that I could do the job? If I was to face this again, would I care that my husband had a brilliant career and earned lots of money if I knew it had made him miserable?

I have been returning to work on Monday afternoons for the last few weeks for staff training. Last week, we had training in a program called, Shut Up and Move On (SUMO). This program is all about how to be logical and balanced in your emotional reactions to events. One thing that was said that I felt clearly reverberated with me was that most of us live our lives on auto-pilot.

Day to day, week to week and year to year we live our lives without thought. We rarely stop and consider what we are doing, why we are doing it and whether we really want to do it. Prior to my illness, I would probably have denied that I lived my life in such a way. A year in which I stepped off the treadmill of life however has allowed me to reflect on the reality of what I was doing, why I was doing it and whether I really wanted to do it.

This year has allowed me to realise that I was living my life on auto-pilot: that much of my dreams and aspirations were ill-thought out or not thought out at all. Some of the things I did previously reflected perhaps a high-moral point of view – it was acceptable, for example, for me to work more than twice the hours (32.5) I was paid for a week because it meant the students got a better education in a better more secure environment. While the moral value of this, i.e. the desire to put others before yourself is incredibly admirable – is it still acceptable? Is the value of what I gave students by working more than twice what I was paid to, worth the fact that it was having a negative impact on my own life?

I recently heard a teacher talk about the self-sacrifice being worth it for the benefit of our students. It made me want to scream. While I have no intention to become self-centred and inflexible, the idea that your life and your health is worth so much less than that of your students is not an acceptable way to live. If nothing else, my self-sacrifice contributed to 300 plus students over the last year not having an English Department that supported them as it should have.

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My life and that of my life with my husband, family and  friends  is incredibly important. Consequently, this life must come first. I am proud of what I have achieved in my professional career so far and I am sure that I will be proud of what I will achieve in the future. I am not however prepared to put my career ahead of myself, ahead of my husband and ahead of my family anymore.

This illness and my recovery (which I’m incredibly grateful for and amazed by) has released me to live my life no longer on auto-pilot. It has given me the freedom to do anything I want. It has also given me the freedom to enjoy the little things in life. The little things that make your life more rounded and whole and that are ultimately significantly more important than what we normally consider to be of more value: educational achievement; career; money; things; house.

Yesterday, my husband and I went for a 2.5 mile walk through the New Forest. A walk I have done a million times. Yet, this was the first time in a year I had been able to do it. I suspect unless you have been ill or have had your future or your ability to do even simple things put in question, you will not be able to understand the simple joy doing such an ordinary thing as going for a walk gives you.

I do not think such achievements as walking or climbing up a hill or reading your book for an hour or socialising with friends all afternoon are new joys. I don’t think they have gone from something of limited significance to now being hugely important. What has changed however is that I can now recognise that they are achievements and recognise they bring me joy.

If these little things can give me a sense of achievement and joy, then there is only one other question. What else is there out there that I have yet to do that can bring me equal if not even more joy or an equal if not even greater sense of achievement?

I was never somebody who was afraid of a challenge, I was never afraid of change but I have learnt that I am stronger and I am braver than I thought and that I can do anything I want. To not, therefore, go out and try and do new things and face new challenges seems an incredible waste of a life.

So last weekend, I went cavern trampolining in a slate cavern twice the height of St Paul’s Cathedral. It scared me so much, my legs shook and for much of it I clung to the net terrified but I achieved all I set out to achieve. I ran several times across the trampolines, I climbed up a scary ramp that required both emotional and physical strength, I went down a slide that scared me. Every time I was scared, I repeated to myself, ‘I can do it, I can do it.‘ Why? Because I could, I got through last year, I can get through anything.

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Every where I look I seem to see challenges just begging me to do them. I have never climbed Mount Snowden so why not? I have never been on the longest zip wire in Europe so why not? I have never driven across Australia so why not? Part of the SUMO concept is to ask yourself several questions so that you can put your fears in perspective. One question is on a scale of 1 – 10 where 10 means certain death how bad is it or could it be? For the three challenges above perhaps a 1 or 2. Although a venomous snake may climb into your car in Australia which may well mean a 10 but seriously what are the chances of that?

While I have yet to learn whether this illness will have left behind any permanent physical limitations on my life (certainly I wasn’t quite physically ready for the intense aerobic nature of the trampolining), I do know that I will always do my best not to emotionally or practically limit my life and how I live it.

The reality of adopting such an approach to life does mean that I cannot predict where we will end up living, what we will end up doing and whether or not I shall stay in education. The other reality is, ‘I can do it‘, I am brave and I am strong. There is nothing I cannot achieve.

The even more observant amongst you will have noticed my blog subtitle has also changed. This required some thinking. How did I reflect what is in my blog prior to my illness, what is in it now and what I hope will be in it in the future? I settled on, ‘Living Life‘. For this is exactly what I intend to do. I intend to live my life not just experience it as a by-stander. So I do not have the answer to the question, ‘What Will Happen to Me?‘ but isn’t that exciting?

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Things Just Aren’t As Good As You Think They Are – Sorry

People, in general, are very nice. People, in general, only want the best for you. People, in general, care that you are ok. People, in general however don’t want to hear bad news. It is much easier to support a person when there is something positive to say about them. It is harder to support a person when something negative is happening. That doesn’t mean people don’t want to offer their support, it is just harder to give.

Over the last two weeks I have come across a new emotional aspect to my illness, one that I hadn’t expected. For about two months I had been making solid progress. Every week I increased one of my activities by 10% and was able to consistently do this. I had gone from walking about 0.5 miles with a break half-way to walking 1.15 miles with a break half-way. My friends and family were so proud of me and so happy for me. I was so very proud of myself and so very happy for myself.

Every few days I would speak to my dad and he would tell me just how well I was doing and how great it was that I was making progress. He was so supportive of me and reassured me that it didn’t matter that progress was slow but what was important was that progress was being made.

My boss was delighted that I was making progress and was more convinced than ever that I would be eventually back at work and eventually working full-time.

Everyone had been so supportive for the first six months when progress was extremely limited and indeed for the first couple of months when my health had only gone backwards. So many people had worried about me and offered me advice (some just plain ridiculous but appreciated). I had felt that I had the world behind me egging me on to recovery.

About two weeks ago my health began to slowly go backwards again. I had reached a plateau in progress but hadn’t consciously recognised that I needed at this point to stop and consolidate my progress. For two weeks my health has been slowly going backwards. Old symptoms such as pain had begun to slowly return. Walking my now 1.15 miles every second day resulted in fatigue, breathlessness and weakness. It took me two weeks to realise I needed to go back two weeks on my progress and stay there until I felt I was ready to start making progress again.

This isn’t a relapse, not quite, but it is a stopping of my progress. Progress I (and my family and friends) had been so very proud of. The progress that had given me and my family and friends such confidence that recovery would eventually be possible. During these two weeks as my health slowly dis-improved, family and friends have continued to say how proud they were of my progress. How great it was that I was making all these big steps. Wasn’t it great I was feeling so much better?

The problem therefore that I came across, that I hadn’t expected, was how do I tell these wonderful people that this progress they are so proud of me for has stopped? How do you disappoint people? How do you say something that will make them worry? I had a slight sense of failure. I was the one who had pushed things too far and had caused myself to go backwards. I was the one through my blogs and other methods who had filled them with such hope and happiness – how was I going to dash all of that?

My husband of course had known I was pushing it and has constantly been trying to convince me of this and encouraging me to slow down. It was of no surprise to him therefore when I had to go backwards slightly. He does not see this as failure and in my heart of hearts I also know I haven’t failed. I have always said to anyone that would listen that M.E. is a fluctuating illness, that my progress would inevitably meet some obstacle it would struggle to get over.

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I knew this but I still felt I had failed. Telling others, who unlike my husband, weren’t physically around to see how I had begun to struggle again was hard. They seemed so happy in their pride in me. They seemed so happy in their hopefulness at my progress – I just didn’t want to destroy it.

Of course my reality was that I needed to tell them. I needed their support and by not telling them they couldn’t provide me with the type of support I so very much needed. Their constant refrain about how great it was that I was doing so well was in fact (unintentionally) not support at all but undermining my confidence that I could bounce back from where I was.

Of course my telling them didn’t make them be less proud of me or less confident that I wouldn’t eventually reach the point of some form of recovery. They quite logically said that I had always expected the road to recovery to be potholed. They quite logically recognised that if I had made such progress before – I could make such progress again. I am sure they were disappointed and sad for me but it didn’t alter their support or love. For this is all that really matters.

M.E. is a disease (perhaps like many others) that constantly throws new emotional hurdles at you. You get your head around one hurdle then bam you are hit in the shins with another one. At times it can feel like the emotional aspects of this illness are harder to deal with then physical realities of it (though at times it is the other way around).

I have always argued that openness about the illness is key to helping people understand what support and how much support you need. Openness is however something that is very difficult to consistently do. As humans we have innate desire not to disappoint or worry others. Often being open requires you to deliberately disappoint and worry people. People need to know however your reality – without this they are ultimately headed towards an even greater disappointment.

I had been dishonest with myself, I had known I was pushing my baseline and yet I had allowed myself to continue. Desperate that when we went on holidays today that I would be able to do so much more than I previously could. I had been dishonest with others by allowing them to continue believing I was making great progress. If I had allowed this dishonesty to continue, would it eventually have been unsurprising if people had begun to distrust me when I later said I was doing well – even if this was true?

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Being open therefore is crucial. People, especially those close to you, need to know your reality, where you truly are with your illness. It may not be where they truly desire you to be but that doesn’t prevent you having a responsibility to be honest and open to not only others but to yourself as well.

Family

Sometimes with this illness you are faced with challenging decisions that have a direct impact on your health. Those decisions I've noticed usually revolve around having a semblance of a 'normal' life. Sometimes the decision is easy, your health must come over everything, at other times it is more challenging.

I personally feel that having a semblance of a life is crucial to my health. Without it, I believe the slide into isolation and introspection could so easily begin. So every weekend I like to try and meet some friends for a drink at our local pub (bless them, they are happy to go out of there way to meet me somewhere local) or go for a short dinner. This has to be prepared for by a day in bed in advance and often a day in bed the next day. If done properly, there isn't such significant pay back that it no longer becomes worth it.

This weekend however I was shown just how important having a semblance of a life is. I was also shown although this illness forces me to consider it every moment of every day, life continues irrespective. It was my aunt and uncle’s 50th wedding anniversary. They were holding a big party in the New Forest in the south of England. My mum and dad flew over for the occasion. My mum, 50 years ago, had been their bridesmaid.

My aunty, although delighted that I wanted to come, was concerned as to whether it was a good idea. This, however, in my opinion is where having a semblance of a life becomes incredibly important. My husband has taught me in the years since we met just how important family is. He has taught me that being there for your family is one of the most important things you can do. So, I was not going to miss it, I didn't mind if I had to have a week in bed if it meant I could do something for my aunt and uncle that would make them feel happy.

My mum was the youngest of 12 and I have 100s of cousins (only a very slight exaggeration). My identity is greatly influenced by this huge Hogan clan. It was with great sadness therefore that we learnt that my uncle, Liam, the oldest of my mother’s brothers and sisters died unexpectedly on Friday night. My decision to go to the party suddenly became even more important. It was a hard night and day for my mum and aunt and anything I could do to support them mattered. For once, I turned off my need to pace and turned on my need to be there for them.

I don’t know if I singularly made a difference to my aunt's night. I do know her being able to look around and see her children, grandchildren and her niece (who was also bridesmaid to her daughter) will have made her happy. I am pleased that I could be part of that.

Sometimes though we are faced with challenging decisions that challenge us because it is emotionally hard to say no. My uncle will be buried today in Ireland and I couldn't even for a second consider going. It would have involved a flight, a taxi, a train, an overnight with my parents, a drive across Ireland, then the standing at the funeral, a meal with my family and then the reverse of the journey home. I would have collapsed and been a burden on my mum just when she didn't need it. I find it very sad that there was no decision to be made but I will be there for my family albeit at a distance.

So I plan, for as long as I am able, to be there for my family when it counts and when I will be able to plan in advance how I will physically do it. This will mean that I won't always be able to be there for them e.g. a funeral where I would just be a burden. I'm lucky, my extended family are just incredibly grateful for my even expressing a wish to do something, I know they will understand when I say I can't.

I keep returning to a thought that saddens me beyond words. As my husband said yesterday, it is only when you compare yourself to other families that you realise just how supportive and caring your own family is. Yet daily I read stories about M.E. patients abandoned by friends and family because they 'can't come out to play' or because it was felt they should have been there at for example a family wedding irrespective of their health.

A lady wrote yesterday on an M.E. forum that today she won't get a Mothers Day card because her daughter doesn't believe she is really ill, that she is putting M.E. on, her daughter no longer speaks to her. That saddened me so much. For surely, even if her mother was 'putting it on', her daughter no matter how hard it was should still be there for her. As somebody else said, "even mental health patients deserve respect."

So today I am incredibly grateful that despite having to make challenging decisions in relation to my family, I do not have to make them in fear that they will abandon me. This support gives me the chance I need to get back to good health.

30ish of the Hogan clan cousins!

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Mmm, really? That’s weird!

I’ve really struggled to write today. I’ve written something but I hate it so much, I can’t publish it. I don’t know why I’ve struggled so much. Which is amusing in itself, in that what I wrote was all about the weird things that have happened to me through this illness that I just don’t get. Today, however, my words are tripping over themselves and I struggle to type without countless mistakes. I don’t get it though because I woke up feeling good and refreshed for the first time since Sunday. Today, however, I can’t write!

Today, it would appear that my brain won’t establish a coherent series of words to form a sentence. Even when I can form the syntax appropriately, it appears I can’t create a sentence that flows and engages. I don’t get it.

There is so much about this illness that is weird. The one that seems to make fellow M.E. patients quite exercised is our often sudden inability to drink. I’m not talking about an inability to drink without getting embarrassingly drunk but to drink at all! Alcohol as a whole repulses me! Seriously, it’s disgusting stuff. I keep having sips of people’s drinks in the hope that it has passed but oh it is just vile stuff. Yet I can drink a gin and tonic! It appears nothing else but I can drink a gin and tonic! Not a big one and I often have to drink one over two days and certainly can’t have more than one a week but I can drink it! I don’t get that! My husband says it’s because it’s bitter but other bitter drinks slip into the vile and repulsive list so easily, he can’t be right.

I don’t have to drink, I don’t need alcohol to enjoy a night but lord a glass of wine with a friend, a cider on a sunny day how lovely! So alcohol quite easily fits into the weird and wonderful world of M.E.

My mother has laughed about how some people she knows (of course I’m not referring to her many brothers and sisters) as they get older have started to have conversations across each other and she struggles to follow them! That’s me, to have a conversation with more than a few people at a time or if there are loud conversations going on nearby, I lose track of my conversation! I struggle to hear what is being said over the noise.

It’s not like my hearing has gotten worse, oddly it’s almost like it’s improved. It’s almost like other noises become amplified around me, making it more difficult to differentiate the sounds that make up the conversation I’m involved in!

Myself and my husband were driving the other day with the radio on. A song only just started when he changed stations. I quite liked the song so understandably asked why he had been so inconsiderate! He responded with, “high pitched noises really irritate you so you will just turn the sound down!” I’ve always turned up the music in the car so loud that he asks me to turn it down, now it appears I often turn it down so low he can’t hear it. Why? No idea! It’s just another weird symptom in a list of weird symptoms.

Have you ever noticed just how colourful our world is? Have you noticed how bright and cheerful it is? Have you noticed just how attractive shops are? I have. Recently, I can’t but notice how bright and cheerful everything is. How on some days I can cope with it and on other days it makes me feel instantly dizzy, gives me instant headaches and makes me feel thoroughly exhausted. My eyes flick from colour to colour, my eyes become bombarded by lots of messages and I seem to not be able to compute it all into something logical and enjoyable!

Golly, don’t I sound like an old,lady, “oh these modern shops, it’s so hard to work out where to go and what’s in the shop!” Can you imagine what I would say if they let me lose in a nursery school at pick up time – imagine the screaming children, the nattering parents, the bright cheerful educational posters and toys – ohh!

I find I write best in bed, first thing in the morning with the curtains closed. I believe that’s because it reduces the impact on my senses, allowing me to focus all my senses and energy on writing rather than having my energy diluted by other stimulants. It’s an odd one. Why do light and colour affect me so and why does their impact on me fluctuate so much?

There are lots of weird elements to this illness. Not least among them is why do random parts of my body suddenly and for a varying length of time feel sore to the touch. My doctor does have a name for the soreness but I don’t recall it. Some mornings I’ll wake up fine and then suddenly my knee will be so sore to the touch that the duvet is uncomfortable. An hour later it will be gone. On the other hand, the soreness can build up slowly. Yesterday all day my arm was internally getting sorer, by the afternoon it was externally sore to touch, by the evening I could barely hold it up and it was extremely sore to the touch. However, it didn’t keep me awake and today it is fine. I don’t understand why – I’m guessing it’s the neurological elements.

Lambing Live! Now that’s a weird part of my illness. For those not from the UK it is a wonderful programme that does exactly what it says on the tin. It shows lambing live! Why is it a weird part of my illness? It makes me cry! Ahh it’s not just the sweet little lambs, it’s not even the sweet little lambs that die but it’s the unflinching commitment of the farmers, it’s the way they tickle a lamb absentmindedly whilst being interviewed. Apparently easy crying is definitely a neurological element so don’t accuse me of going soft or anything!

So my world is constantly full of weird symptoms, some come and go. Some come and take up residency rights. I think people can get feeling fatigued (we’ve all had an horrendous cold) though perhaps not constant fatigue. I think we can all get pain (we’ve all broken something or some how ended up in pain) though perhaps not constant pain. I don’t think people would so easily realise the other symptoms or indeed perhaps get them.

Once again, I never intend to moan or sound pessimistic. I’ve actually shocked myself about how positive I am overall. I’m not saying I don’t ever find it hard – of course I do, I’m human, however generally it doesn’t get me down. I just want to write so that others understand my illness and my situation better. Rather high-mindedly, I’d love if my words resulted in people getting how somebody they know who suffers from M.E. might be feeling.

So today I shall wait intrigued as to what weirdness my body will throw at me – if indeed anything!

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Friends and Family: Learning to be Ill

I have always been a very sociable person. Not in the sense of I have a 100 best friends who I couldn’t live without. Not in the sense of loving to go clubbing until dawn every weekend (in my early twenties definitely but not in the last ten years or so). I am sociable in the sense that I need to interact with people. I need to sit and chat, debate, discuss, laugh with people. I think I would struggle to live in a world where I never saw anyone but myself and my husband.

My world has narrowed considerably over the last number of months. I no longer work so that social interaction has disappeared. I do still try and meet friends at the weekend but usually for no more than 40mins (although I managed 90mins yesterday!). My neighbours are all quite old and don’t really socialise, at least not with me. My closest friends live many hours away from me. My family live in Ireland and my in-laws live many hours away as well. So my world has narrowed considerably although not quite to it just being my husband and myself.

What I have noticed though in myself is an increasing awareness about what others might think of me. Most of the time it is irrelevant. When I’m hanging off a wall because I’m too tired to keep walking, I don’t really care if people think I’m drunk or crazy. I do wish they would ask if I’m okay though, there have been days where I hoped somebody would help me walk the last couple of minutes home. Strangers can think what they like.

The thing that really matters is how your friends and family interact with you. This has been done before but I thought my audience included people with no knowledge of M.E. so I too should include this important information: the dos and don’ts of interacting with me as a friend or family member.*

Let’s start with the Don’ts

1. Don’t tell me just because I look good the day you see me, “you look so much healthier, isn’t it great you’re getting better!” It’s not that I don’t want that to happen but if you don’t know the full story, you don’t know what I’ve had to do to look so good that day – slept all day in preparation, rested repeatedly whilst doing my make-up. It annoys me because it makes me feel you are belittling a genuine biological illness. I know you don’t mean to but it’s how I feel.

2. Don’t make parallels between myself and somebody who has ‘recovered’ unless you genuinely understand my illness and theirs. Unless you know the full picture and tell me it, how can I really be inspired by it?

3. After talking to me about how I’ve had to reduced my activities substantially just to get by, don’t tell me that you know x inspirational person who has M.E. but they have children or a job (which you don’t) and have to push on through and they’re doing well. Pushing on through will delay my remission and you don’t know their full picture, you don’t know what they have to do to appear to ‘push on through’ successfully!

4. Don’t ignore me, I know you sometimes don’t know what to say because you don’t understand what’s wrong. That’s okay, I still don’t thoroughly understand what is going on so how can I expect you to?

5. Don’t remain ignorant of M.E., do a little bit of research. You won’t truly understand my day to day life but at least you’ll get an inkling.

6. Don’t suggest that I’m lazy. Think about it, was I lazy before this began?

7. Don’t be afraid to ask me lots of details about what is wrong. If it helps you to understand and to give me support, why would that be problem?

8. Don’t be upset or annoyed if I cut our meeting short. I really appreciate that you may have gone out of your way to meet me. I really appreciate that you assumed we’d spend more time together. Understand though that if we do, I will become quite ill and pay for it later.

9. Don’t offer me advice unless it is thoroughly researched. I know more about this illness than you do. You don’t recover from this in the same way as other Chronic Fatigue illnesses. I find it upsetting that you think there is an easy answer that would have made me better already.

10. Don’t pressurise me into exercise or try and get me to be more active. Being more active unless very carefully managed can make me very ill. I know you’re used to an increase in exercise levels being crucial to somebody’s improving health. It’s not the case for us.

11. Don’t tell me that you know what it is like to be as tired as I am because you’ve had a long day at work. Be honest, you don’t know what it is like unless you suffer from a chronic debilitating fatigue related illness. I don’t want to undermine your sense of being exhausted and I don’t mind you saying you’re exhausted but don’t say everyday tiredness is the same as my fatigue!

The Dos

1. Do assume I’m telling you the truth about my illness. Think about the type of person I was before I got ill – am I really crazy or lazy?

2. Do assume I need more support than I say. Offer to help around the house or simply offer to make the tea when you visit. It is then my choice to take you up on that. Understand though my sense of dignity makes me hate to accept help. Keep asking though, I’ve noticed that my sense of dignity doesn’t care so much anymore.

3. Watch how I look, if I start to go pale, lose words, seem to lose focus, tell me. Ask if I would like you to go as I look like I’m getting tired. That way you don’t just leave making me feel that I’ve done something wrong also you might be making me aware of my increasing tiredness that I’ve not noticed because I’m really enjoying your company.

4.If you’ve done lots of research into M.E. and have had long conversations with me about how I experience the illness, do share what you’ve learnt. We more or less have to deal with this illness alone without medical support. Why shouldn’t you discover the thing that will help me if you know as much as I do about the illness?

5. Do offer me your non-judgemental comfort through your words, actions or touch.

6. Do try and make arrangements to see me in a way that you think will make it as easy as possible for me. Ask me if these arrangements are okay. I hate to have to ask someone to change what they’ve planned because I can’t cope with it. I’d prefer to tell you we don’t have to do coffee at home, instead we can walk into town together. I will really appreciate you trying to make life easier for me.

7.Do stick by me, I hope to not always be like this even though I might. I may not always be an easy friend to have but I will always try and be your friend.

As a teacher I always try and show children that life is not only about rights but ALSO responsibilities so this is what I need to try and do.

My dos and don’ts

1. Don’t get upset by what people say unless I consider first whether it was meant nastily or just said through ignorance.

2. Do ask for help when needed.

3. Do accept that some people (such as my husband) know me better that I do and I should accept that they often know what I should do before I do.

4. Try not to let every conversation be about my illness. I know it’s the only thing that really matters in my life anymore but it’s easy for other people to get sick of a one track conversation. Equally, it’s not good for me to only think about one thing.

5. Do accept that people’s lives go on without me and their failure to keep in contact with me, although upsetting, may not be because they have forgotten about me but because they have full lives that have to go on in my absence.

6. Don’t always assume that my friends should contact me. I know I worry about being a burden to them and they may not want to speak to me but I won’t know that until I try. Friendship is a two way street after all.

7. Do accept that my friends and families don’t mind if you cry on their shoulders and rant at them about the medical profession. They are my friends and family after all. Also accept that if I never share the negative things then they will worry that I’m hiding the things that worry me. This will worry them!

My best friend, Sarah said the other day that I have to ‘learn to be ill’. Sarah was ill for much of her life and so knows what she’s talking about. Our friends and families need to also learn how to cope with having an ill person in their lives.

When you were in school did you find every subject as easy? Did all the students learn at the same rate? Of course they didn’t, as long as our friends and family are learning how to cope, we have to be patient. Is this not just part of our learning to be ill too?

* this is my viewpoint, others may thoroughly disagree based on their own personal experience, illness or understanding.

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