Archive for January, 2011

Noise Brain Explosion

As some of you on Facebook might have seen I had an intense noise sensitivity reaction yesterday.  There were sudden bursts of squealing grinding drilling from workmen next door – and by that I mean effectively in the rooms next to our bedroom and lounge (pretty much where I am 98% of the time).

I haven’t suffered badly from noise sensitivity for a while now.  Sure some things still bug me and some things rob me of all concentration and focus but on the whole it’s been pretty stable.  I can even have the telly on and read at the same time which is amazing compared to a couple of years ago.

So not only did I react badly to the noise but I was shocked and scared by the extreme reaction. It seems ridiculous but I was crying and shaking and absolutely desperate to get away from the noise.  It didn’t help that I was just at the point of doing something that used my brain and my computer was on a go slow so I was frustrated too plus tired/weary from poor sleep/IBS flare earlier in the week.

I sat at the top of the stairs with my ear defenders on (still able to hear the noise but somewhat muffled) trying to finish the task I had started, shaking and snuffling.  The stairs is the furthest point away from our neighbours side.  What I really wanted was to be able to go out and escape.  So of course that makes it worse because I can’t go anywhere.  I am stuck and suddenly feel the weight of that.

The noise didn’t last very long and there were just a few bursts through the early afternoon.  My neighbours are wonderful and usually warn me about work but I guess as it was the middle of the day thought it would be ok or forgot this time.  And it’s not their fault.  How could they know my ME would make me react so badly when I couldn’t have predicted it?  And how can you fit windows without making noise?  No it’s the ME that has me miffed.

I felt like a wild animal startled by something loud and alien.  I wasn’t in control of that intense reaction and it left me exhausted.  My throat was sore and my glands were throbbing which is what I used to experience with the slightest stress when my ME was a bit worse.  I think this combined with other clues has to indicate that my ME is worse at the moment than I’ve realised.  Usually it’s fatigue and brain fog that are my first indicators of a flare or crash but this time it’s other things. Perhaps that shift is due to LDN which has helped the fatigue and the brain fog. Though I did struggle to read a book last night that I was skipping through the day before so cognitives are a bit mushed.

There was I am sure a good reason why I started to blog about this but honestly I’ve forgotten.  Completely gone. Brain exploded and sensible thoughts have hidden away in dark corners.

Today, with continued banging, tapping and electric tool noises I’ve had my MP3 earphones in with ear defenders over the top.  It’s been quite effective but the ear defenders make my head squashed and hurty after a while.  And there’s only so much music I can take in my ears no matter how lovely and calming it may be.  Now the sun is out I’m wishing I could just go out even more.  Especially as I think my neighbours went out for the day to avoid the noise.  I don’t often feel like I’m imprisoned in my home but today I kind of do.  Hey it’s only a day or so.  And it is the exception to the norm.  So I shall be grateful that the norm is so good and just suck it up.

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Back and Forth

When I was formally diagnosed with ME in January 2007 the printed information sheet my GP gave me said that ‘most people make a recovery within 4 years and those who don’t will probably be ill for the rest of their lives’.  It haunted me then and it haunts me now despite this idea being largely discredited since.

Four years seemed an impossible amount of time to contemplate being ill for. The six months I had previously been signed off work sick for felt like an incredible period to be ill for. I had heard the theory of ‘4 years’ while I was off sick but before a diagnosis had been made and just before I married I asked my husband if he really wanted to go ahead in the knowledge that this might, possibly, just persist for a while.  What if I *am* ill for four years, I asked.  I don’t think either of could comprehend it but it scared me silly.

Having first seen a doctor to report symptoms more than 18 months before my diagnosis once it was confirmed the taunt of ‘4 years or bust’ made me determined I was going to beat this illness.  I wasn’t going to let it win, let it rob me of anything more.  After all 4 years was a long time in which to get well and I wouldn’t feel this ill for all of that time because I would improve. Linear progression like everything else in life, no? Well actually, no.

Now here I am 4 years past my formal diagnosis having had symptoms for 5-6 years. It’s frightening to say it so plainly.

Pretty much everyone who is informed doesn’t say “most people recover in 4 years” anymore because it’s not been proven to be true.  But it still hangs over me because once it was a milestone. That one day I would be able to think back and laugh at the idea of worrying whether it would take 4 years to get me back to health.

In truth I made a small recovery after the big crash of December 2006 (after a disasterous phased return to work), a further small recovery when I started on D-ribose and had medication for pain control and then a further small recovery when I started LDN in December 2009.  But I’m still not close to being back to the level I was at before the big crash despite that in itself being pretty poorly. I still long to that level of ill because compared to now it would be such a relief.  I could drive, I could do physical things for short periods, I could do stuff – even if it left me exhausted and needing to rest.  Now it’s mainly rest without the doing.

It’s no wonder I’ve been feeling kind of down this month.  Combined with recovering from Christmas and festive exertions January is again a bust this year.  And my great hope of LDN, despite it giving me some improvement, a year on hasn’t given me as much as I had dared to hope it might.

Growler’s job is being made redundant in July and as the organisation winds down it’s stressful place to be let alone with the added pressure of finding a new job that is a) something he wants to do, b) pays well enough to support us both, c) hopefully is within easy commute so we can stay put and I can keep my supportive GP and d) with a bit of luck offers some flexibility for when I need extra care or if my condition were to worsen.

Lump into the equation that the British government is sharpening the knives for the disability payment I recieve along with not being well enough to make much of a meaningful income on my own and it all gets a bit too much.  I just seem to be waiting for life to start again and as the lives of family and friends along with the big wide world marches on with me sat on the sofa only able to watch.

I did find reading one of my favourite articles about coping with chronic illness a comfort.

We all have periods when we feel overmatched and not up to the struggle. But as long as we pay attention to the struggle, we will get through the day. We flounder when we set unrealistic standards, or cannot grieve for what has been lost, or cannot start each day afresh. Depression can be tackled despite the physical complications that try to drag us down.

In some moments I think depression is coming back to get me again but I’m pretty sure it’s just sadness, loss, grief, frustration, stress and anxiety about what the future holds.

Revisiting the site my GP used for the information sheet 4 years ago, which has been updated, has helped a little.  Now it reflects the vague complexities of what I am wrestling with in terms of prognosis.

What is the outlook (prognosis)?

In most cases, the condition has a fluctuating course. There may be times when symptoms are not too bad, and times when symptoms flare up and become worse (a setback). The long-term outlook is variable:

  • Most people with CFS/ME will show some improvement over time, especially with treatment. Some people recover in less than two years, while others remain ill for many years. However, health and functioning rarely return completely to previous levels.

 

  • Some people will continue to have symptoms or have relapses of their symptoms.

In some cases, the condition is severe and/or persists for many years. Those who have been affected for several years seem less likely to recover.

Improvement with treatment? Which they say is managing your sleep, managing rest, relaxation and diet? That improvement plateaued some years back for me. At least the “4 years or bust” has gone from their advice now.

But I feel a failure for still being ill after all this time.  I feel powerless because the only change I can effect on my health is acceptance and working to minimise flaring symptoms. That’s not recovery from illness as most see it conventionally. That’s surviving, that’s living as best as one can. That’s sucking it up and dealing with it.

I don’t quite feel hopeless, not wholly hopeless, no.  Hope is still one thing I do have.  Hope that things will change, that I will get better, that I am not to be lost in this mire of ME for the rest of my life.  Yet I believe that ME is something you have for a larger or lesser degree forever.  How do I reconcile these opposites?  Hope that I don’t really have ME – that it’s psychosomatic or an adrenal problem or a chemical inbalance and that all this grief and loss has been the cost of an oversight?

I don’t really know where I go from here other than to put one front in front of the other and keep going.  I don’t have any new plans of attack.  The only things left are desperate miracle cures and taking a year out from everything (everything that keeps me balanced and sane and happy) to try and do things differently but without knowing what might work.  That or winning the lottery and paying a doctor vast sums to tinker with my engine until I work again.

Most of the time I am coping and content in the small limited world I am able to inhabit thanks to a lot of buffering by my wonderful husband.  I do appreciate the small improvements since 2007 and have no wish to go back to that level of disfunction.  I’m just sick and tired of ME is all.

Just a Little Bit: Year long fundraising for ME Reasearch

11/365 moneyLast year I took part in the Just Four Quid campaign to raise money for ME Research.  The idea was to use money saving tips to save cash for yourself and then give a little of what you saved to charity.  With a lot of support from friends and family I managed to raise £390 for ME Research UK

The campaign ran from May 2009 to May 2010.  But once it finished I decided to keep it up for another year and see if I could raise another £200 pretty much by myself from saving bits of money here and there.  I also would try to give around 10& of my earnings from my art sales.

http://www.justgiving.com/rachelcreative2010jfq

I’m very grateful that friends and family have also contributed this year and that has meant thanks to their generosity that I’ve just reached my target of £200 with 4 months still to go!

I’ll keep contributing to see just how far I can push past the target but it’s brilliant to know I’ve reached the goal!

Got some great books from the library. Been a long time. Love high tech self service!

I’ve done this mainly through:

  • using vouchers and coupon codes to save money, using special deals or opting for free postage from shops
  • making use of my local library instead of buying certain books and DVDs then giving on average £1 per book and 50p per DVD
  • making a contribution from what I’ve earnt on art sales
  • using my credit card for all my transactions then donating the cashback I earn

I’m glad my brother just gave a big donation to push me past the target as I’ve gone a bit book buying crazy this month so not many savings (although I’ve shopped around for bargains buying used books). In my defence I’ve been buying books my library doesn’t stock and so that I can post them on to my friend living in India whose feeling a bit starved of Western culture.

But it still remains that the £200 target for ME Research is met and there’s still scope for more contributions before May 11th 2011.


Fundraising


Push It 11 Sep 2011

for ME Research

CFS Links & Resources

See my entire list of CFS/ME/CFIDS links to sites, articles and resources via del.io.us
http://del.icio.us/rachelcreative/M.E.
New stuff is added all the time.