ChronicallyMe

This week’s latest symptom is terrible gastric cramps/pain which I’ve been experiencing in the evening and at night.  It’s been a while since I had a bad run of IBS cramps which is particularly annoying as my diet is pretty good at the moment. 

That’s not really what I wanted to talk about though. It’s just that yet another round of symptoms and pain made me think something startling.

Whilst I was huddled in bed last night hoping to squash the pain away I thought something that has never entered my head before … CFS has ruined my life. 

CFS/ME has trashed my life - totally.  It has robbed me of pretty much everything including hopes, plans and aspirations for the future.  I think of my mum’s quivering lip as she has (on several occasions) been close to breaking down at the thought of all the things I may never get to do (including having a family of my own).   She can only bite her lip, look away and ask in a quiet voice to change the subject.  And I see the pain and it’s like a manifestation of the pain I feel, the grief I feel for the things I may never have.  This illness ravaged my life and that of my family.

What’s really shocking though is that, odd as it may sound, I don’t remember having heard that thought in my head before - CFS has ruined my life.  This was the first time it had occurred to me even after two and half years of being ill.

I’ve felt immense frustration.  I’ve felt anger, despair, longing, grief and utter sadness.  I’ve asked why me, why now, how did this happen, when did it start, when will it end,  how will I cope, what if I never get better, what if I get worse, did I do something to deserve this?  I’ve said it’s not fair, I don’t want this, it’s not real, I am weak.  But I’ve never felt that this illness has ruined my life.

It’s certainly squashed parts of my life.  I’ve lost my job and am now unable to work.  There’s a list as long as my arm of things I can’t do, shouldn’t do, dare not plan for.  But I think I have managed to maintain a focus on what I can do, rather than what I can’t.  It hasn’t ruined my life because - well - I have a good life which makes me very happy.

The list of can’t-do is so large and overwhelming it really doesn’t help me to dwell on it.  What’s the point?  Far better to live the best life I can while I can.  Some days it’s easier to set aside the can’t-do list than others but a far larger proportion of my life is spent on the can rather than the can’t.  It’s a lot easier for me than for some as with the support of my husband he enables me to use a large amount of my energy on things I enjoy rather than having to fight to just do survival tasks.  I am very fortunate in that regard.

As soon as the thought “CFS has runied my life” flashed across my brain I realised that way madness lies.  To allow such a thought into my heart and carry it with me would be toxic and sure to drag my spirits down into a deep depression.  It would be too too easy to wrap this thought around me but it would suffocate me and really would ruin everything I have fought so hard for.

All of which makes me reflect and realise that I do a pretty good job of being positive.  Positivity isn’t a trait I tend to associate with myself - it’s not something that has, I thought, ever come naturally.  I’m the first to moan when I’m tired, hungry, unhappy or ill.  I hear myself and think of Eeyore.

But it seems I’m able to be a lot more positive than I ever realised.  Faced with the brutal reality of how incredibly hard it is to be largely housebound due a fatiguing, disabling, debilitating chronic illness I seem to keep my head above the murky waters (most of the time).

I think I also have a deep belief and hope that it won’t be like this forever and that one day I will get better.  I’m not sure if I will get back to my old level of healthy but I have a hope that I will and that I will be even healthier.  I am realistic about the prognosis but hopeful.  I am, it seems, just like the help guides I read last year said I should strive to be like.  Which for me is a huge relief and a cause for celebration. 

I have worried that I am too negative, that I haven’t learnt to accept my illness and my limitations, that I don’t push enough or that I push too much, that somehow fundamentally I am Getting It All Wrong.  When in fact I am doing a pretty good job.  I’m not a super human and my illness isn’t consistent or predictable - so there’s going to be a lot of ups/downs and swings/roundabouts and constantly shifting ground.  And that is ok too.

There is also a lot to be said for the embracing of a simple life with simple pleasures - a necessity deemed by chronic disabling illness but one which has many benefits to offer. 

Not everyone can stomach that silver lining talk.  How can something so devasting be a good thing?  Well of course it’s not what I would wish for - I’d like to be bursting with energy and making the most of a full, active life with few limitations.  What I am saying is that even with a life stripped to a bare minimum you can still find happiness.

For me thinking that CFS/ME has ruined my life has been a really uplifting experience.

That last post I could feel the sadness welling up inside me.  I caught up on some on regluar blogs today and there’s so much sadness, pain and illness in people who should be living happy carefree lives.  I am torn about reading blogs sometimes because I don’t want to feel that sadness but at the same time I relate to it.  Plus many people have such enormous challenges in their lives and still they laugh and love and live.

I must also not forget that often my own blog has sadness and pain and hurt in it too. 

SO … I am thinking some happy thoughts to balance out myself and to remember that all our lives are not just one colour or pattern.  And to re-assure you that I am indeed OK I shall recount one of my happy thoughts.

It was Mothers Day a few days back and I always want to take my mum out someplace if I can.  She’s active but has been struggling with some health problems and side effects from medications herself recently - so if we (me and Growler) can take her out places it’s such a bonus.

After a lovely lunch we visited the National Memorial Aboretum in Alrewas(Staffordshire, England).  We had my wheelchair and this was my first leisure outing since Christmas!  I was so excited to be out and even the sun came out for me.

The lady at the entrance suggested Continue reading ‘Thinking Happy Thoughts’

In my last blog post “Sick of Not Being Able” I shared some of my frustration with ME/CFS plus a crappy virus which has made the last 2 months really difficult.  My husband has today blogged on the same tale from the healthy side of this partnership in “Big Ball of Frustration“.

It took me a long time, along with the regaining of some of my life/faculties/energy back from the virus, to realise that maybe when my husband grumbled at the cat for wanting a bit too much fuss, or wanting to go outside when  he’s only just come in, and so on … that perhaps it wasn’t about the cat at all.

It’s not often that Paul talks in public about our life with ME/CFS and it’s a great post - so I encourage you all to go meet my lovely husband.

I’m still fighting the virus I caught over a month ago at Christmas.  But the last few days I seem to making a marked improvement.  Which is terrific news as I seem to have fought the virus almost as well as my healthy counterpart sufferers (even if it leaves me virtually at a standstill as it comes on top of ME/CFS).

My days have changed shape to look a little more like they did before Christmas - sleeping 10 hours, sitting in bed with laptop and manageable distractions until mid afternoon then (washing every 2-3 days), dressing and moving downstairs to the sofa for the remainder of the day.  I’m even thinking that shortly I’ll be able to speak to my parents on the phone, arrange a short visit or two and stand in the fresh air for a few minutes.

During the virus I’ve been able to handle even less distractions than usual, zero pottering about, forcing myself to get out of bed at 5pm and move downstairs (to keep the blood pumping properly), every day struggling to dress myself, and washing went down to every 4-5 days if I was lucky.  I went a month without a bath, shower or hair wash because I just didn’t have it in me - even with someone else washing me. 

These aren’t pleasant things to admit to the world - but they are the reality of my illness and the impact of an additional virus to fight leaving no energy reserve for anything else.  No energy reserve for phone calls - to hold the phone, to listen, to make sensible sentences even once I had enough voice to do so.  No energy reserve to take my little sketchbook from my bag, let alone to move the pen or attempt to form lines that made sense.  No energy reserve to pick clothes from the pile to wear, or slide open the drawer to find a pair of socks.  Some days no energy reserve to hold my electric toothbrush, brush my hair, reach over for my cup of herbal tea, lift my walking stick off the floor, point the remote at the tv, stroke my cat, pop tablets out of the foil, hold Growlers hand.

Suddenly I’m very happy to be able to find my own pair of socks even if I can’t dress until late afternoon. 

My tiny improvements might not seem so significant to the majority of people but it’s a welcome relief to me.  It’s still not easy - I’m still living days which are very small and require a lot of help - but the sun is breaking from behind the clouds at last and I’m chronically happy.

I have been awarded Disability Living Allowance!  I am so happy!

They have given me Lower Rate Mobility and Middle Rate Care allowance.  Plus they have awarded it for 2 years.  Great news.

I am certain this is down to a strong application with lots of additional information, seven supporting letters/statements from family and friends and a great GP who I suspect wrote a spot on report for the DLA decision makers.

I wholeheartedly recommend subscribing to www.benefitsandwork.co.uk to anyone considering applying for DLA.  They also provide advice on Incapacity benefit claims.  Their advice guide is just brilliant - it’s easy to follow, it decodes the ridiculously complex DLA form and it tells you step by step how to give the strongest application you can.  They also left me in no doubt that I qualify and that I should apply.

As well as owing a huge than you to the family and friends who wrote supporting letters and stood by me through this process, and a huge thank you to my GP - I know none of it would have been possible without Growler’s help.  He did all the hard work - extracting from me what I wanted to say, filling in the gaps in my thinking/memory and writing up the 50 plus pages of questions and additional information sheets.

I am so relieved not to have had to have a doctors visit/medical.  The letter says my application, further information and GP’s statement was enough for them to make an award.  I have even received the back dated payments already!  Plus it took them just 2 months from me posting the form for them to make the decision - not too bad by government standards!

Now I just have to decide how to use the money.  Especially as I wasn’t really expecting to get it.  Perhaps a gardener, or a cleaner, or part time P.A. to do errands and little tasks … or to save it towards something bigger … an electric wheelchair, a go slow holiday, an electric bicycle … or practical things like taxi’s to get more independent, supporting my huge vitamin habit, investing in more pyjamas, buying a shower seat … or to invest it for bleak rainy days …

Hmmm. A nice problem to have.  Wonderful in fact.  It IS possible to have CFS and qualify for DLA.

I’m having something of a new year, post christmas flop.  I can’t assess if it’s the christmas exertions (however carefully planned this year) or just the cold and sinus infection I have picked up but I’m distinctly floppy.  My meager level of activity has been reduced yet further whilst my desire to plan and get stuck in to projects is strong with the start of a brand new year.

New projects and new plans will have to wait. Indeed I must take the floppiness and delaying of plans as part of the 2008 master plan.  There is no fine detail planning to be done when you have CFS/ME - because even if you reach better health a set back is never far away.

I’m not saying this in a negative sense - no matter how it sounds.  There is no point planning my life ahead on the basis of regaining the health I once had - because no-one can say if that will happen and it’s commonly believed to be unlikely.  Even recovery must have one eye on the possibility of major relapse.

2008 for me is going to be about further phases of acceptance for the life that is now mine. 

If I make a startling recovery to health then I am prepared to have to make some major adjustments to embrace good health.  I’d be delighted to do that and I maintain hope that it will happen. 

However, without a proven treatment or strategy to get me there it seems continuing trial and error to regain health is the only path for me.  Meanwhile I can embrace a life within my limits.

There’s no new discoveries here.  Just a reflection that since my formal diagnosis 12 months ago my condition has changed only slightly and faced with that reality I would rather be living for the present than for a vague possibility of the future.  This actually means I think, a lot more of the same.  Working toward the same goals, seeking the same rewards in life, using the same attitude and approach - just accepting this isn’t a temporary state but something more semi-permanent.

I don’t have anything very new or profound to say.  It’s just another chapter of life within limitations to be savoured to the maximum possible without detriment to myself or others.  To be clinical yet spirited.  To be constrained yet free.