Archive for September, 2008

Knife and Fork Exertion

So I am thinking I am a little better.  Like 1-2% better.  I have been able to start painting canvases for the first time in a a couple of years.  My cognitive function seems much improved.  I’m able to have 2 or 3 things scheduled a week instead of one thing every 2-3 weeks (like doctors, hairdressers, visiting parents, having lunch out, helping my brother with some design stuff).  Things are looking good!

But then … I’ve had stiff shoulders and neck for weeks now.  I’m taking migraine meds more frequently than I have for a few months.  My glands are throbbing which is a pain that has been under control since I started the low dose amitriptyline.  And last night I had to get Growler to cut my roast duck breast up into pieces for me because my arms were weak after trying to do it myself.  Defeated by a roast dinner, a knife and a fork.

So whilst I may be 1% better I think perhaps I am trying to do 3% more and thus getting back some of the pains and symptoms that have been well controlled with low dose amitriptyline.  Sometimes I can do that 3% but sometimes not.  That’s the skill I am not quite managing of living with this illness – how to adapt to those fluctuations.

I often read about people with CFS/ME/CFIDS who have good phases were they feel able to do things and then flares where maybe they overdid it and they get a real bashing from their illness.  I don’t get those good phases. Why don’t I get good phases?  Maybe because I am trying to pace as best as I know how.  So I am consistent and (hopefully) on a long, slow recovery path. 

I think about how I felt, or more like what I was capable of, before I started my phased return to work in 2006 which ultimately left me where I still am now in terms of incapacity.  I fought so hard to do those 4 hours of office work a day (4 days a week). After a few weeks I was fighting to do 5 hours a day. Then 6 hours. Then after what I thought was a slow, gradual, phased building up to recovery I crashed to feel worse and be more ill than I’ve ever felt in my life. 

It seems those 3 months of trying to get back to normal have had a year and a half legacy (so far).  For the sake of a few spreadsheets, a few dozen queries resolved (all really just a drop in the ocean for my past employer) here I am unable to eat a roast dinner without someone else cutting up my food for me.

Would I have been able to comprehend back in summer 2006 that 3 months of trying to work, even on a massively reduced scale, would take me more than 2 years to recover from?  I doubt it.  But I might have been scared enough to not risk trying.

Hindsight is a wonderful thing.  A heads up from one of the doctors I saw in that previous 10 months of reporting I was ill and how something was wrong with me might have given me a much better chance.  Ho hum.

I guess I’m recounting the story (yet again) to help me come to terms with where I still keep on finding myself and maybe in the hope that someone in a similar position – who is exhausted, grotty and feeling like normal things are getting harder month by month, and who is not getting answers from their GP, might maybe think twice about trying to tough it out.  When they say pushing yourself when you are run down can make you ill they kind of understate what is at stake.

The way I cope with all this, the way I keep living and living as well as possible, is to focus on the positives and to focus on what I can do and not what I can’t.  I can’t go back and change what happened in the past.  You can only ever goes forwards in life.  Even if you end up back at square one it’s never really square one because you’ve experienced a lot of things since you were there last.

So I shall make a mental note to adjust that 3% of extra “trying” so as not to add a longer or more painful chunk to my recovery.  I have at least learnt that continuining to push past your limits with ME/CFS is almost certain to come back and bite you.

But I also celebrate that 1% extra that does seem possible.  You have to love the 1%.

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Blue Badge Support from my GP

I saw my lovely GP this morning for a routine sort of check up (check in?) and whilst there asked if she would be willing to support an application for a blue badge.  This is a scheme in Britain and Europe that allows those with eligible blue badges to park in designated areas (disabled bays) usually closest to facilities and attractions.

She was enthusiastically happy to support an application and apologised for not suggesting it herself earlier. So yes, my mother was right every time she nagged me about this over the last year.

Now all I have to do is download the forms from my local authority and (shudder) get some passport photos.  I’m tempted to take my own photos and have them processed through an online company who do passport sized prints for these kind of things.  At least then I can have photos done on the day I look the best even if I don’t feel the best – rather than trying to organise a trip to a photo booth in a train station or similar place and hope (optimistically) I don’t look like I’ve just climbed out of bed (which I probably would have done).

This means I can also have the passport photos I need to get the UK cinema pass/card that proves I am eligible for a “carer goes free” seat without having to produce my DLA documents or enter a discussion about what’s wrong with me.

Oh and also at the doctors this morning I finally managed to tell her about some (embarrassing) women’s problems.  Firstly, having cramps around a week to 10 days before my period is almost certainly to do with ovulation and nothing to really worry about.  It does happen at different times in life apparently and has a sweet German name mittelschmerz (meaning “middle pain”) for midcycle pain.

The second women’s thing is as yet unexplained and I’m booked next week with the nurse for tests.  But the doc had a couple of ideas and wasn’t overly worried.  So I am less anxious – these things having been worrying me on and off for ages.  I’m so glad to have a GP who listens and actually talks to me like I’m a human person.

Finally we’re both happy with the medications so no changes there. She did offer again (“just to remind you of your options”) referrals to a CFS Specialist Clinic or alterntaively referrals to the Psychiatric Nursing Team for CBT and Physiotherapists for GET.  No thanks!

She did say “Just reminding you amd myself what the options are when you are ready for it” which is slight change in usual language. She usually says ‘it’s up to you’, ‘no pressure’, ‘IF you wanted to’.  But there was a mild ringing of alarm bells with the “when” rather than “if”.  But she didn’t press me on it and didn’t say she thought I should or anything like that – so far so good then.

I wonder what GP’s say once you have done CBT and GET and it doesn’t make your illness better?  Do they suggest you did it wrong, do they suggest there’s no more options or do they look for different/new treatments (ha ha).  I can’t see I’m going to find that out for myself.

Anyway – overall a good docs visit with the lovely GP.

Who I Am Now, Who I Was Then

After my mother-in-law and sister-in-law were asking some questions about how I am and how my illness impacts on my life it made me realise that I still measure who I am against who I was.

My definition of who I am is a reduced version of who I was, like before but not so active.  But I still measure how I feel now against a benchmark of where I want to be, which is based on where I was before.

Maybe this is too confusing for the ME brain ;o)

See I realise I am still hoping to recover to 75% or more of where I was before I got ill.  And that I expect that to happen within the next 12-18 months.  That would be within 4 years of being ill.  This is not an expectation which is at the forefront of my mind – it’s something quiet and buried deep down.

On the one hand I am pleased I maintain the hope. On the other I wonder if I don’t recover to this expectation will I go through another level of grieving.  I think it’s a case of dealing with whatever the outcome is when it happens. 

But it’s the first time I’ve realised I am still holding on to that initial picture I was given that “most people with CFS recover within 4 years”.  The evidence for that statement is flawed yet I hold on to the hope.

I also realised that I do not fully embrace who I am right now because I still measure against who I was before my illness and, in turn, who I want to be again.  Or rather the level of physical function and health I was before.  I’ve surely moved on as a person in these 2 plus years.

So I wondered – is it a problem that I do not define myself in the now, for who I am now, for what I am capable of now?  And I don’t think it is a problem. 

I’ve read plenty of advice that says you must accept but you must maintain hope. 

I think I do accept, mostly accept, but I do have times when it all hits me again like a blow to the stomach.  Like when last night I was so tired but needed to clean stuff up (womens things and not something I can ask for help with from my husband) and just a few minutes later I was utterly exhausted and in pain.  I could have sobbed I felt so helpless and crushed by this illness.  Fooled into thinking I was a little better and then stripped back to pain and headache and exhaustion from a few minutes at the wash basin.

I can see that not fully accepting and embracing my current level of capacity makes for these moments of shock and upset when I realise I am unable to do the things I always want or need to.

BUT wouldn’t accepting these current limits as who I now am make it incredibly difficult to do more when my health improves?  Maybe it is a better way – that I would wake up one day in 6 months time and discover I can go for a walk to the corner, I can stand and wash up the dishes, I can spend a few horus reading a book without it making me ill.  To see a bigger increase in health rather than the drip drip increase (often two steps forward one step back) approach I have now.  This is all assuming that I will continue to improve of course.

But what struck me is that most people are defined not just by who they are now but by who they have been.  A healthy adult is not just the job he does and the activities he does now – he is also the person who played football at 11 years old, studied for his exams as a teenager, went out to rock concerts in his 20’s. 

We don’t ordinarily ditch the parts that made up who we once were – so why should we do that as chronically ill or disabled people? 

Why must I let go of being the woman who would always step up to help with the physical work, to re-decorate the house, to paint a canvas with intense energy, to cycle and walk for miles without thinking about it. The woman who read into the small hours of the morning rather than put the book down, to attack the gardening with shears and power tools, to work extra hours, solve problems and explain complex ideas simply.  Who would chat for hours to friends on the phone, to listen and to be there when a friend was needed. The girl who had dreams and believed she can charm the wind and talk to dogs and was as alive in her imagination as in the real world.  Who wrote stories and wanted to drive trucks and thought boys toys were better than dolls.  These things are still within me and part of me.  I’m not going to deny them. I’m not going to shut them away.

What we need is not a new beginning as a person with a chronic illness.  We need to learn how to live fulfilled and happy lives within the limits we have and still be alive, in our hearts, with all the things that have made us who we are. 

To balance the life we dreamt of with the life we have.  Because everyone has to do that – ill, disabled or not.


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