Tag Archives: support

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 It is well out of date but I don’t think it matters.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.

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.

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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Needing to be independent

Until I was about 31 I couldn’t drive. I’d never needed to get my driving licence. Suddenly, we were moving to a town where without my own car my independence would disappear and I wouldn’t even be able to work. A mad few months of driving lessons, theory tests etc began. On my in-laws wedding anniversary, August 26th, I passed my test.

The first time I went out in the car by myself, it felt amazing, I felt free! Now my father-in-law has made a sensible suggestion but it is a suggestion that logically I agree with but my heart screams, “No!”

He has suggested I sell my car, I haven’t used it since November and it sits at the side of the road, depreciating. A car needs to be used or it starts to have problems and mine is not used often. So logic would agree, I don’t think I’ll be driving it any time soon so yes it should go.

Selling it however feels like it removes my ability to be free, to be independent. I’m one of the lucky ones, I don’t have severe M.E. so to some this worry will seem frivolous, they no longer worry about losing their independence because it is long gone.

However, I have already lost so much of my independence: I haven’t been in a supermarket since Janurary; I can no longer even walk into town for a coffee; I can’t plan my own holiday and then just wander aimlessly around when we get there; I can’t leave the house whenever I want and go for a long walk; I can’t spend a few days alone when my husband goes away; I can’t plan my career; I can’t spontaneously decide to do something social; and I can’t drive.

Selling my car feels like it might be the start of a slippery slope towards those that have lost total independence. It would only be a monetary decision but it feels like so much more than that.

For me, being independent was always a crucial part of who I was. At 19 I moved to London for three months, I did the same at 20 and at 21 I moved there to do a Masters degree. I knew nobody and had to create my own life, get a job, find a flat. At 24 I moved to Poland with accommodation for a few weeks but no job, no language, no bountiful money and only one friend. Each time I faced these challenges pretty much alone and revelled in my independence. I have always loved being around people but I’ve never really needed them.

Today, I’m faced with needing people, not just loving being with them. It is a challenge to deal with and this is one thing I haven’t quite dealt with yet. I hate to tell people that they need to bring me home because I’m tired now, I hate to tell people to get me things because I can’t do it myself. My greatest hate is asking my husband after his long day at work to do jobs at home while I have spent the day on the sofa: I hate that I can’t do it all!

When you read the M.E. forums this sense of dependence on others seems to have the greatest emotional reaction. People desperately need the support of others but crave their own independence.

When I was well, I never considered the importance of being independent. I never thought about my elderly neighbours, those who were unwell around me, those who through illness or age have lost their ability to be truly free.

I hope when I get well, I don’t forget what the reality of losing some (luckily) of my independence was like. I hope I do something to help others retain their independence. I hope I don’t become oblivious again to those that fear it’s loss.

Will I sell my car? I don’t know – I don’t think it is a decision I’m ready to make.

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