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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Unadulterated Relief

As a teacher I have spent my career trying to instil in students a sense of the importance of respect: respect for each other, themselves and the world around them. I try and teach them that respect does not have to be earned. They should assume that everyone deserves respect from the off. If they live this way, then nobody will feel ill treated by them and respect should come back their way.

Since becoming ill, I have had to consider whether reality matches the ideal that I preach daily. Unfortunately, not everyone understands this basic human right of respect. Today’s blog is not meant to be a moan however but a celebration.

Yesterday I cried, I cried and I cried and I cried. The sort of hysterical tears that you can’t control as much as you want to. For once these were not tears of frustration, pain or anger but of sheer unadulterated relief.

Relief that somebody who understood M.E. deeply had shown me some respect. As always with this illness you have to go it alone, you can’t just sit back and assume the medical profession will guide you appropriately. In my search for my right to informed, respectful medical treatment I came across the National M.E. Centre. A charity that offers a free support service to patients suffering from M.E.

Yesterday Sue, a support worker, called. It took a few minutes to lower my defensive guard, a guard being built up by the lack of understanding about what is wrong with me by those in the medical profession. I don’t doubt those I have come across so far mean well (though maybe not idiot consultant) but I always fear that a lack of understanding could led them to suggest inappropriate treatment. Her specific questioning, the time she took to listen to my responses and clarify what I said forced this guard to just fall away.

She was kind, caring, realistic, human. More importantly she understood. I have never doubted that I have M.E. – I can tick off most symptoms on the list. It is only when somebody who truly understands the illness says you have it, that you can be sure. This was a relief in itself.

Not everything she said was good, there are realities to face that I didn’t realise I had to. She made me trust her however and this trust means I don’t have to face these realities alone. She is sending me information and will call again in two weeks to support me further. The knowledge that there is now somebody out there who gets it, who has lots of experience with M.E. gives me hope, hope that with their guidance I can begin to make progress, I can begin to stabilise and find a way through the myriad of symptoms and potential treatments.

Far beyond her practical suggestions, her caring yet professional support is what has filled me with this hope. Little does she realise that she has also brought relief to my husband and my parents. They have been desperately searching for a way forward for me. While I am not foolish enough to think that there is now a guarantee I will get better and get the service I need, there is at least someone there who understands.

Now I feel my fight for access to a pain clinic, a proper M.E. consultant and an occupational therapist is backed up by somebody’s professional opinion. I will still have to fight and there is no guarantee I will get to see any of these but at least I know I am fighting for something worthwhile.

So today my positive thought is – having experienced the deeply emotional impact of being respected yesterday, today I must ensure that I don’t judge people, until I know them. I must respect the fact that I don’t know what makes them the way they are. Equally, I must fight for the rights of others to be respected. It appears just a tiny bit of genuine respect can have a far greater impact than I have ever realised.

The National M.E. Centre

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Boom and Bust

Sunday Afternoon

The last three days have been good ones! This was after my worst five days for ages (thanks NHS consultant for three days of that!) I even went out for dinner with friends Saturday for an hour and a half and I still felt good! Hell, I went to a National Trust property with my husband today and had a small wander around the grounds (although they did allow us to park in the disabled car park!). Certainly by this afternoon I was tired but still better than I had been in weeks! I feel so excited by this.

I know I’m being foolish and there is little doubt that this joy will come crashing down soon but I feel so hopeful that this is the beginning of the end. I haven’t had three such good days in a row since all of this began. Who can blame me for feeling hope. If things are going to start getting better, it’s going to happen eventually, it has to! I’ve even allowed myself to dream about slowly returning to teaching after Easter!

I feel so good today that oddly I’m feeling very guilty. I feel like I was scamming all those good people who really have M.E., that really suffer every day. I feel like I’ve been pretending to be as ill as I’ve been

Monday

I have chosen to write today though perhaps I shouldn’t have. I have done it however in short stages and have slept in between. The quality is appalling but I felt it was a chance to show the immediate reality of boom and bust

Arrogance comes with a fall. Suddenly last night I wasn’t even able to carry my plate into the sitting room for dinner. I wasn’t even able to pick it up. Trying to do so resulted in tears. My husband tried to force me to eat but I couldn’t. I simply didn’t have the energy to put my fork to my mouth and swallow.

I struggled into bed and lay there in a daze. My friend called me and I ignored my own dos from yesterday’s blog. I spoke to him for 40 mins despite feeling increasingly dizzy and ill. I should have hung up but I didn’t want to.

On hanging up, I collapsed into hysterical tears, tears of frustration, anger and despair. For the last three days I had arrogantly assumed I was better than I was, I had allowed myself to have hope. This collapse dramatically proved that I was wrong, that it wasn’t the beginning of the end: it was just M.E. I had made excuses about doing more than I should, allowed myself to believe that because I was getting better, it was okay.

Now Monday morning I lie in bed, in pain having failed to sleep much throughout the night. I’m clock watching until I can take my next Ibuprofen.

Shame on me for forgetting I have a seriously fluctuating illness. Shame on me for ignoring my husband when he told me to do less. I allowed myself to get excited and now I’ve been bitten in the bum by this silly illness.

I must now focus on being grateful for three good days, keep the hope that it might happen again. More importantly I must be on my guard more about doing too much. I must try not to fall into the boom and bust followed by Post Exertional Malaise trap again. I must listen to my husband when he says, “No!” I must follow my own rules!

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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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Nobody’s Children Adopted?

If you haven’t read yesterday’s blog, you might want to read it (below) before reading this one.

Yesterday after publishing ‘Nobody’s Children’ I received an amusing (but accurate) email from a family friend, Victor. I’ve always called him my adopted Daddy and I think he is quite upset by the lack of understanding of and treatment for M.E.

His email:
I read about your latest NHS encounter, became emotionally involved, defensively I then switched to analytical mode and came up with this:

That UUP ‘Specialist’ you met deserves almost as much sympathy as you do. Put yourself in his position! There he was, all full of confidence in his knowledge and expertise in his speciality, framed certificate on the wall to prove it all and suddenly, OOOOPS! He is confronted with something he knows absolutely nothing about; your ME.

Like a plumber dispatched on an emergency call-out who finds himself being expected to deal with a house-owner’s heart attack. Any average plumber will have the wisdom and good manners to declare his ignorance of the coronary technology required, decline the job and pass on the responsibility to someone better qualified. That was an attitude regrettably absent during your consultation, although vast, reverberating, dark caverns of slimy ignorance were clearly in evidence.

But the really BIG mistake was not made by the unfortunate ‘Specialist.’ He was clearly Unfit for Purpose in the circumstances, exactly like the plumber who was sent to the wrong address. But that wasn’t the plumber’s fault. BLAME the DISPATCHER or matchmaker or computer operator or whoever else it may have been who arranged for you to meet THE WRONG PERSON who happened to be UUP (UTTERLY UNFIT for PURPOSE).

If the matchmaker/ dispatcher doesn’t know the difference between ME and a JCB, and gleefully clicks selection boxes on a computer screen that ensures a balanced workload for all classes of medic, regardless of suitability, surely that is the area that needs urgent attention in the NHS?

My reply
Oops! I am the UUP!!! Nobody could tell me who to see so I worked out who was closest to me!!!

His response
Rubbish! How can YOU be the UUP? The system failed you, so you tried to DIY. Good on ya!

It made me think, that ultimately until we understand enough about what causes M.E. and importantly this information begins to trickle down to the doctors (though ideally in a well-structured, efficient education program for GPs, physios, occupational health, consultants, nutritionists, psychologists and psychiatrists amongst others) there will remain only a few specialists out there who are FPs (Fit for Purpose).

Stanford, March 19th 2014, may well have seen history made for ME/CFS patients. An international symposium of M.E. experts yesterday presented to a standing room only audience the key findings of a wide range of studies. These finally make it possible, that with just a little further research, an understanding of causes and treatments will be found.

ME/CFS is a multi-system disease, it is far more complex than many diseases out there. This is reflected in the wide range of papers presented yesterday.
1. Daily fluctuations of Cytokines
2. Gene expressions
3. Cardiovascular Aging
4. MRI findings
5. EEG studies
6. Medical care of patients
7. Inflammatory and Autoimmune profile
8. Microbial diagnostics and discovery

A wonderful man, Cort Johnson, a journalist who has set up various high profile M.E. websites (e.g. Phoenix Rising / Health Rising) and an M.E. patient himself for 30 years, spent 5 hours Tweeting the key findings as they were presented.

I am no medical expert and I struggled to follow much of what was said but I do understand people’s reactions to this event and more importantly those of the real experts (the FPs). Through his Tweets the ground breaking nature of this symposium became incredibly clear. Phrases such as, ‘high hopes’, ‘convinced that inflammation is the key’, ‘ME/CFS is the last big disease to make your name in’, ‘it is an inflammatory disorder’, ‘the most amazing MRI presentation I’ve ever seen’, ‘a very strong result’, ‘bingo’, ‘ME/CFS is going to teach us so much about the brain’, ‘landmark study’, ‘staggering results’, ‘ME/CFS is not a psychosomatic disorder’, ‘sense of urgency’.

Various presentations also mentioned how many of their research programmes were ongoing and expected exciting results in the next few months. Many mentioned that they thought that soon there would be a real understanding of its causes and even possible treatments. Many, however, also mentioned how lack of funding made it a struggle to do.

How many out there, if they have heard of ME/CFS would say, “oh, you mean like Yuppie Flu”? The media has spent decades (largely dating from the 1960s-70s) stigmatising M.E. The psychiatrists colonised it for their own end, accusing the patients of being depressed or crazy or the like, based on little or no empirical evidence. If you can’t explain it in empirically, then it must be in your head theory.

The people who knew this stigmatising was wrong were in the weakest of positions to fight back. I currently could probably walk for 10 mins at a push and I am healthier than some so how do we march in protest? How do we force ourselves onto Talk Shows and into government offices until somebody will listen? The answer, most of us can’t, at least not very easily. So we depend upon the healthier amongst us and people who have never had this illness to fight for us. We are not an ‘attractive’ illness however, we are the ugly girl at the party that the other girls won’t play with. We come with a false stigmatism, a deep misunderstanding among many in the medical profession. We are not the go to research area. We are not glamorous and apparently groundbreaking enough. (Seriously is the above not groundbreaking?!)

Which group experiences on average more pain? M.E. patients, spinal cord injury patients, patients with chronic pelvic pain or muscular dystrophy patients? Wrong – an M.E. patient. Would the public be happy to ignore those other ailments, would they allow those patients to be told “it’s in your head” – good god no! They’ve worked out causes for the other illness, they have empirical data. Well so do we – almost.

The latest fad on Facebook is the makeup less selfie for cancer. As my friend put it, that doesn’t do much good, raise money instead. While I am in total agreement with her, how easily could I get thousands of people doing the same thing for M.E.? How many schools would have non-uniform days for M.E.? Like I said, we are the ugly girl at the party.

So what can we do – we from our beds can do little but use our words to fight for our corner. Others, friends, carers etc can do more. Help us to be adopted so that we are no longer Nobody’s Children.

I have listed below organisations you can make donations to, mainly UK based. As this blog is read around the world, if you know of others let me know.

Do something so that M.E. patients no longer cost the US in earning and spending losses alone, $18-51billion (£11-30b) a year and the UK, £102 million ($168m). M.E. patients tend to be the strivers, the driven, the ambitious. Do something so their intellectual wealth can benefit your country.

UK
Invest in M.E.
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US

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Nobody’s Children

Many years ago when my husband was in the army and he was yet to be my husband and still only my live in boyfriend, he was instructed to move camp. As part of moving camp they would pay for a moving company to come in, pack up HIS house and move HIM to Dorset. They would move up to one large lorry.

On discovering however that he lived with someone and was unmarried, they refused to move US. This was despite our combined flat contents being significantly under the capacity they were prepared to move for HIM alone.

He spent many hours trawling through the army regulations and discovered that as long as our contents was not over his individual capacity (rather than married couple capacity) then they had to move us! I remember at the time we thought how if you didn’t have the education, the time or confidence to investigate then you would have to pay for the move yourself. We discussed how the system had the power to make an individual’s life excessively difficult.

I always find this upsetting when society limits somebody’s abilities purely because ‘it’s the system!’ I felt this way again yesterday. I consider myself incredibly strong willed, confident and able to defend myself. I cried yesterday however because I felt so abandoned by the NHS system.

Having waited 3 months to see an ‘M.E. consultant’ (notice the inverted commas – he was an Infectious Disease specialist), I finally went to see him yesterday. I wasn’t expecting miracles, just guidance and support. I wanted to make sure that what I was doing was the right thing and guidance on where to go from here. I wanted him to perhaps suggest, based on the severity or not of my symptoms, what my possibly timeline was.

I walked away from the appointment in floods of tears, barely able to stand due to sheer exhaustion and stress. I have never felt this way before and I am strong.

I won’t go into too many details (check out any M.E. forum if you want to know how horrible these appointments can be!). Suffice to say he never asked me about my symptoms, I had to shove them in his face, pointing out my symptoms record (this appeared to be highly bemusing to him).

He seemed to focus on my stress levels (clearly thinking I was depressed or such like!). He informed me I should have gone back to work earlier although I had been trying to tell him some days I could barely get out of bed, I couldn’t drive and I found ‘easy’ socialising for more than a half hour exhausting.

I walked away with no idea whether my system of pacing was any good, no idea how to build up my activity level, no idea how to deal with my pain levels. When I requested this information he spoke in generalities. Speaking to my husband afterwards, we both felt that he didn’t know the answers and was trying to get rid of me.

What upset me most afterwards was what I felt was his total rejection of my right to treatment and support. I pay his salary through my taxes so theoretically he works for me. I have the right to go to an appointment and be treated with respect.

Imagine though that you were not me. Imagine that you had to travel there on your own by public transport for an hour because you had no one to bring you. Imagine you didn’t have the self-confidence to say to yourself, ‘he’s an idiot, you are ill and you need to ignore what he says.’ Imagine if you as a result of your meeting assume that you’re not as bad as you thought so you return to work (driving) and ‘get on with your life as normally as possible’. The consequences of not standing up for yourself have the potential to do serious damage to you not only physically but emotionally.

The lack of specialist M.E. centres in the UK and the lack of a _ist specialism for M.E. means that patients see Infectious Disease specialists, Rheumatologists and Neurologists. There are many of these specialists out there who are great, on the other hand if you read the forums many of them lack the specific knowledge to provide sufficient support.

The lack of empirical evidence of the illness through run of the mill blood tests seem to result in some doctors not knowing what to do. This leaves patients alone, trying to work out how to deal with things themselves without qualified support. Somebody called M.E. patients ‘nobody’s children’. Nobody wants us and nobody can support us.

I have made an appointment with my GP and I will be requesting a referral to one of the M.E. services recommended by other M.E. patients. Would I have done this if I wasn’t able to have such a ‘screw you’ attitude? Is this an example of society favouring the emotionally and indeed financially strong (none of these clinics are local and may even require a hotel stay)? I think so and it upsets me.

I’m in a good situation where I am likely to recover as my support network is so strong. Those without this network daily have to go beyond the energy thresholds just to survive. These are the people who need the support of professionals most and these are the people who may not be able to add a fight for decent service to their energy expenditure. This upsets me.

Update: I have spoken to my GP. She thought my treatment was bad as well. She is going to refer me to a pain clinic and is going to try and refer me to an M.E. Clinic of my choice. Somebody in the NHS is good!

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The Danger Zone

First off, I must apologise for not writing yesterday. Yesterday was a bad day; in the morning I lay in bed unable to get up wondering whether this was it, was this the moment I became bed bound. It wasn’t though, I rose after a few hours. I was, however, unable to write.

Was this the danger zone? The moment where I feared being unable to get out of bed? I don’t think so. The danger zone is far more benign looking than that. It is so sweet and innocent and relief bringing that it is so very, very easy to forget that it is the danger zone.

The real danger zone, the one where you need MI5 and MI6 to watch out carefully for all signs of potential attack, is a good day. All over the M.E. world I suspect carers and patients are firmly nodding their heads in recognition of this. Those who have never spent time with someone with M.E. may on the other hand crinkle up their forehead in confusion. Why would a day where you feel good be dangerous? Why would it not be a day you luxuriate in? Well yes, we do luxuriate in them but they also scare us.

Post exertional malaise or post exertion relapse (or indeed any of it’s other names) is the spectre that haunts us on good days. Somebody recently described themselves as an energiser bunny on a good day. All they want to do is buzz around the place doing everything they can’t do on a bad day. Cleaning the house and having a shower seem to be close to the top of the list! (Who would have thought that M.E. makes you dream about cleaning the house!). Meeting friends for a drink and staying up late are also high on the list.

Post exertional malaise (PEM) is something everyone has partly experienced. We’ve all been on a wonderful long walk and woken up the next day unable to move. Your muscles have built up too much lactic acid (I believe!) which causes you pain.

The problem if you have M.E is that you build up at least three times more lactic acid than the average person. Plus your anaerobic and aerobic thresholds are significantly lower than a healthy person. As a consequence, it can take very little exertion for a patient to suffer from PEM. For some, it can be as little as sitting in a chair by their bed for 5 minutes. For me, it is any form of mental activity or as simple as sitting doing a jigsaw puzzle for too long.

The PEM twist is of course that it doesn’t just lead to aching muscles but also brain fog (the days where we seem crazy or stupid!), intense fatigue, heart palpitations and for some emotional fragility (I suspect due to just feeling pants!). So the price you pay for stepping into the danger zone can be very high. For some PEM can last for a few days, for some weeks.

On a bad day, it is easy to not do too much – we feel so pants that we can’t really over do it. On a good day it is so easy! Every morning I must plan my day to ensure I don’t do too much. I can’t just hop out of bed and see what happens.

My life is based around activity points (imagine a Weight Watchers system). I’m no expert at pacing and I have had no specialist advise on what to do. This is a cobbled together plan by reading lots and getting advice from my mum and husband. It constantly is adapted as I try and create a pacing system that works for me.

I’m allowed 12 points a day. So on a good day what can I do: shower – 2 pts, 3 x 5 min walks – 4.5 pts, make lunch – 1 pt, write my blog – 2 pts, stretches – 2 pts. Total – 11.5 pts – I try and leave a little behind for unexpected activities (e.g. a telephone call). Look again at my day – how much do I achieve? Do you see any socialising? Do you see any hobbies other than my blog? If I want to do these things, something must go.

I want to meet friends for a drink in the evening for 40 mins in a pub 5 mins walk from my house. How do I do it? Don’t walk during day – saves 4.5 pts, don’t shower (fun when you are going out with friends) – saves 2 pts, don’t do stretches – saves 2 pts. I must eat lunch though and I enjoy writing my blog so that means I keep 3 pts.

So I have spent 3 pts out of my allocated 12, leaving 9 points. Walking to and from the pub will take 3 pts, leaving 6. A pub is a noisy place: lots of talking and music. A pub is also a busy place: lots of colours and people and different activities going on. Plus of course all the socialising with my friends. So my 6 points isn’t enough for 40 minutes. This is an 8 point activity. So I have to go into activity debt. Tomorrow I will have only 10 activity points to withdraw from. As it is, using those 2 extra points may be enough to result in PEM.

So on a good day we try and work out how to enjoy ourselves, get on with life but not do too much so that we end up in the danger zone and consequently experience PEM. We can never fully relax and forget about our M.E. no matter how good we feel.

So when you see us out and about – it is a good day but in our brain we are trying to balance whether it is worth it to spend that extra 2 mins to walk to our favourite shop or whether the enjoyment that brings will not be worth entering the danger zone for.

Despite all of this, a good day brings me a real sense of relief and plants a seed of hope that this is the beginning of recovery. So while recognising it is the danger zone, I can still enjoy it.

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I’m Sorry I Haven’t a Clue

Radio 1’s* average listening age is 32, Radio 4** – 55. Which do you think as a 36 year old I listen to? Aficionados of one will know from the title! Yes, Radio 4. I rarely listen to Radio 1, I find it quite irritating! Yes that makes me old for my age, well at least that bit about feeling old for my age happened before I started staggering around like a 90 year old because of M.E.

There is a program on Radio 4 called, as above, ‘I’m a Sorry I Haven’t a Clue’. They call it the antidote to quiz shows. When a contestant doesn’t know an answer they say – I’m sorry I haven’t a clue! This is what I feel like saying on a daily basis when faced with questions by others or myself about my M.E.

I’m not alone. In the last twelve hours the following questions have been asked on M.E. forums on Facebook:
1. Since menopause my symptoms have gotten worse – has anybody else experienced that?
2. Has anyone tried Ritalin for cognitive impairment?
3. Has anyone tried Gastrodin?
4. Has anyone tried Peony Immune?
5. My daughter has worms and the doctor gave us Vermox to take, including me. Does anyone know why my symptoms have temporarily, completely disappeared?
6. My wife has M.E., do you mind telling me how severe you are and what meds you are on so I can understand how severe she is?
7. I take Gabapentin for my sleep, it gives me very disturbing dreams – does anyone else experience this?
8. I get very bad anxiety attacks where I can’t breathe. My doctor wants to give me anti-depressants, I don’t want people to say my M.E. is in my head, what should I do?
9. Anybody have any tips on sleeping at night? I don’t sleep for more than 3-4 hours a night.
10. Has anyone had any trouble swallowing?
11. Does anyone know where I can get a badge that says, ‘I have an invisible disability, please be patient’ people think I’m slow or crazy but it is just my brain fog.

This is just a sample of questions posed by M.E. sufferers, re-read them though, they reflect the wide spectrum of concerns that patients / carers have: sleeping, cognitive ability, pain, work, living with an invisible illness, society’s perceptions of us, worry for a loved one, hope and fear.

Each question has many, many responses as the M.E. community jump into action to support each person, reassuring them that they are not alone, advising them from their experiences, thanking carers for being so supportive etc.

Despite this though, the questions keep coming and the reality is none of us to varying extents have a clue about what is going on and what to do. So we support each other as much as we can.

If I could find somebody with all the answers, I would want to know – categorically what is making me ill. I imagine it would be easier if I knew what was inside in me, making me feel like this. If I could pinpoint a chromosome or an organ and say, ” hey you, you are responsible for this!” I imagine it would make me feel better.

I would want to know how to pace myself. Doctors, physios say don’t go beyond your abilities. How do I know where that line is without going beyond my ability?! I want to know whether the cinema, theatre, foreign holidays are good ideas without having to catastrophically discovering that their not by doing them!

I would demand they tell me whether I will be part of one of the two 25% clubs. One composed of those who recover more or less completely and get on with life. The other sufferers who become permanently and severely affected. They need to tell me what I need to really do to become part of the better group or at the very worst not become part of the other.

Somebody needs to make it clear what my timelines are. At what point will I start to get better or worse, at what point will / won’t I have enough energy to do x, y or z. This lack of clarity is so frustrating. You can’t plan ahead because your ahead could be very different to your today.

If they could tell me my timeline, I would want them to tell me exactly what I have to do to make the journey easier or the direction more certain.

I would want to know whether I can trust what my doctors and medical specialists tell me. My physio has given me exercises to do. I only got them a week ago. Since then, everyday I do them (on a good day) I seem to have a bad day the next day – is that a coincidence or am I doing damage to myself? I’m sorry I haven’t a clue.

They need to tell me whether I will ever work again. If I do, will I be able to work as a teacher or will I have to find something else? If I’m a teacher, will I have a career, will I be able to work full time?

Most importantly, I would want to ask them – what is the cure?

The reality is though that when you ask medical professionals these questions, they have a particular way of raising their shoulders and saying, “sorry, I can’t say.” Just say, I’m sorry I haven’t a clue, it would be much more accurate!

So it is to the forums and support groups that I will return for they seem to say, “I’m sorry I haven’t a clue but try this it might help.”

* national radio station in the UK, general plays pop music, light news etc
** national radio station in The UK, serious news, talk shows, highly respected

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A day in my life… (A bad day!)

I’ve been overwhelmed by the response to this blog. I thought family and friends would read it but not anyone else. It has astounded me that so many M.E. patients have seen themselves reflected in my words.

It has also saddened me that so many have said, “you’re lucky you have friends and family who believe you”, “my family all think I’m lazy”, “my family force me to do things because they don’t understand I can’t.”

I cannot conceive of being in that situation. The loneliness and fear must at times be overwhelming. Several people have asked me if they could share my posts in the hope that friends and family would read it and realise that they weren’t lazy, anxious, depressed, making it up etc. It has been an honour to say yes.

Yesterday I had a bad day. That got me thinking, if I could somehow get into words what yesterday was like, perhaps others could use it to show that they are not making things up. I fear I do not have the words to describe a bad day however.

It all started late the night before, suddenly I felt weak and my joints and muscles began to hurt. I slept reasonably quickly but not comfortably. At five I woke in lots of pain: my back and neck ached; I had a headache (not severe but enough that I could feel it constantly); I had a sore throat (not so bad I couldn’t swallow but enough that again I could feel it constantly); my knees felt like they were burning; my arms were weak and hard to hold up, rubbing my cat was too hard; and my lower leg muscles felt stiff and tight.

I was absolutely wide awake despite my short nights sleep. I wrote my blog in bed for about 30 mins despite the pain but my fingers kept tripping up on the keyboard. I had to constantly delete words and rewrite them accurately! My fingers felt clumsy and there was an aching feel in them.

By six, I felt there was a chance I could sleep. However, by removing the distraction of writing the pain became so bad that I couldn’t. I took some Ibuprofen. I try not to take too much of it because of the damage it could do to my stomach. I’m also aware that the time may come when I need more painkillers and I don’t want to get too used to them now.

I lay in bed until seven unable to sleep, unable to get comfortable. By then I was also hungry which wasn’t helping my sense of comfort. Food, however, was downstairs and I was in pain. Sitting up slowly (otherwise I get very dizzy), I sat at the edge of the bed getting up the energy to move.

To go downstairs I had to take each step one at a time. Each step lead to a pain running from the sole of my feet to my knees. Walking slowly with an unsteady gait I got my breakfast and sat at the kitchen table. I couldn’t sit there long though because my head and neck were unsupported meaning my headache worsened and my back got even sorer.

I then had to face the stairs. I hate stairs, who would ever have thought that stairs would become my enemy. On a bad day, such as yesterday, every step hurts, it takes monumental effort to raise my leg and put it on the next step.

On returning to bed, I at least was no longer hungry. I lay there uncomfortable but at least in slightly less pain because my entire body was supported. At 9.30 I got up, got dressed and went downstairs. I sat there zoned out for 30 minutes. I only got up because my wonderful friend was coming to see me and I really wanted to see her, there was no way I would have gotten up otherwise.

She stayed for an hour which was lovely but I was in pain and struggled to keep up the flow of conversation. By the time she left, I felt deep in brain fog, dizzy and walking had worsened. I lay on the couch for an hour and eventually gave up and went to bed for a few hours.

I slept, which made all the difference. For a few hours, I felt clearer and in less pain. It wasn’t too bad if I literally sat there with my feet up and did nothing but zone out on the TV. As soon as I tried to use my brain, the pain, fatigue and feeling of general unwellness came back and felt debilitating.

By four I was dreaming of bed, we are told however to not sleep during the day so despite desperately wanting to, I stayed up. I ate dinner at six but really only had a few mouthfuls despite being hungry, I was too tired to go through the process of eating.

At six fifteen I went to bed. Within the hour I felt so much better, at times even quite bright. I’m no scientist so don’t ask why but the process of lying down always makes me feel so much better. Every time I went to the toilet however the pain and fatigued came rushing back. I believe it is something to do with the abnormal size and shape of my white blood cells. Don’t quote me on that though!

By ten I was ready to sleep but as happens with M.E. sufferers my brain jumped into over active mode and I couldn’t. I listened to the radio, I tried to do relaxation breathing and I think about midnight I fell asleep.

What I found so difficult about this bad day was – I have no idea why it happened, not a clue. Usually I can say, well it must have been spending time with my friends, walking too far etc. Not this time, this time I had spent the day before recovering from a bad day the day before that. I went for three short five minute walks and that was the most strenuous moment of my day. It made no sense.

Not every bad day is like this, every bad day has it’s own combination of symptoms and severity. Remember too, I’m only a mild to moderate sufferer, for those worse than me, their bad day is something luckily, I can’t describe.

I don’t write any of my blogs for sympathy, I, perhaps pompously, write them to inform people about the illness, about my reality of the illness. This blog I hope will help those people who face disbelief and disgust on a daily basis. I hope the disbelievers, those who don’t give the support they should, recognise their loved one in this and actually ask them about their reality.

Feel free to share this, the more people who do, the less likely somebody today will hear that they are lazy, depressed or making it up.

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