And … Stretch …

I am resolved to getting back into the routine of doing the excellent physio exercises for my back.  Thing is I keep getting resolve to do this but haven’t managed to keep it up.  So far this week I’ve done them once everyday except one so that’s pretty good going and I’m building up the repititions slowly.  They are not taxing exercises at all and are really just stretches but they help build muscle and control to support the back.

They also help stretch pretty much my whole body in places it doesn’t get stretched day to day.

I have a vague plan to work towards building in more stretches/exercises as I build my strength.  A lot of the physio exercises I have are actually based on Pilates which I didn’t realise when I started.  I have a Pilates book which the physio I saw for my neck/headaches said was excellent and she told me which exercises were ok for me to do with my back problem.  Problem is a) getting into the routine of doing it and b) understanding the instructions with my brain.

So I’ve decided to try the DVD which gives instruction on the first part of the book.  Of course I am blogging this to try and emotionally blackmail myself into sticking with this plan so that I am eventually doing stretches and exercises regularly.  I hope it works or I’ll have to hang my head in shame.

I was also just about to buy the Yoga for Fatigue book off Amazon when it told me I already bought the book last summer. Sure enough there it was sitting in the bookcase hardly looked at.  Seems I’m out of excuses, I thought to myself.  But once I opened the book I realised why I haven’t adopted it into my routine – becauase again it’s lots of words and kind of difficult for me to understand what to do.  So I’m going to have to find a way to tackle it, break it down and do it bit by bit I think.  Or maybe get Growler to read the instructions out so we can figure it out together until I’ve learnt it.  My phsyio exercises I know off by heart so I just have to get to that with these other things too.  Perhaps. Optimistically speaking!

First step is to build up to full sets of my physio exercises which actually left me stationary with fatigue this morning.  Luckily they are all lying down exercises except for the last one so I just lay there a while longer to recoop enough zip to get up again.

I also need to start doing the extra phsyio exercises for my neck and shoulders as they did really help with tension headaches and posture.

Will I keep all this up?  Maybe not.  But starting up several times a year has to be better than just not doing any of it ever. Trying to think positive and not beat myself up for what I’ve not done or can’t do.

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.

Measuring By Your Own Experience

I remember learning that most people tend to react to situations by measuring them from their own experience.  That is, you apply what you’ve experienced yourself to the matter in hand.

I have tried really hard from that day forward to not limit my understanding to my own experiences and I am the richer for it.  But it’s terribly difficult not to do it because often we can only call on what we know to make sense of things. Often we want to be able to help, to offer kind words and it’s easiest to do that from what we already know.

It’s much easier to say what some of the little that you know than to say ‘I don’t know about this but I’ll come on the journey with you’.  Much easier than to admit to ourselves that we don’t know all that much in the grand scheme of things.

Especially so because often our contact with people and situations is casual, or we aren’t able to invest that much in it so and we don’t want to have a silence  – so we fill it with advice or the knowledge we have ourselves.

What this post is really about is the plumber.  A very nice, very talkative man.

He came to give us a quote on some little but urgent jobs and on his way out was asking what we did.  He vaguely remembered from last time (wrongly) that I was a student.  So I was brave and said no I was sick and didn’t work.  Was I signed off?  No I’d not worked for 4 years from being sick – I have M.E.  “Oh never!” says the plumber, “My wife had that”.

My heart always sinks when people say “had that” in the past tense.  The first was a hairdresser who said they had it for a couple of months.  Groan.  It usually indicates people who’ve had an illness that doesn’t seem to sound much like what I have wrong with me.

To be fair to the plumber he was really, super nice about it all.  Told me his wife had it when she was a teenager back when people laughed at you for having it.  Told me she had to take time out and go back to do her education over a series of years.  Told me they have 2 young children and she’s a lot better now.  Told me she still gets tired and gets monster migraines from the M.E.  Told me he’d pass on that I have it and that I can call her anytime to chat about it if I want to talk to someone who knows all about it.

He also told me I’ll get better.  In fact he told me I can’t get any worse – I can only get better.  “Honestly”, he said.

“Ummm.  Yer … but … I have actually just relasped a bit …”

“Ah” he says “do you get it where you’re fine for a bit and then you’re in bed for a week?” he nods to encourage my yes.

Actually this is the kind of ME that mystifies me.  This periods of ok, periods of very ill is an alien concept to me.  I expected in the early days that this is what my illness would like if it persisted.  Maybe I’d get a lot better and then crash for a week, pick myself up and get back to it.

When that patch of “ok” didn’t come I thought perhaps I was just on a wider arc than most. Perhaps I was in a crash for a year and soon I’d be ok for a year, then maybe crash a bit and get better – but on a longer timescale.

Nope.  I’ve been “on a consistent level of crap” (as I said to the plumber) for nearly 3 years.  I improved very, very slightly over that time it’s true – but nothing to write to the DLA people about.  Not enough to go to the corner shop on my own, let alone get a job or have much of a normal life.

So the plumber telling me I can only get better, I can’t get worse has made me pretty upset.  With myself.  For not being successful at recovering, for not ‘only getting better’.  For failing.

Him telling me the key was a positive outlook didn’t exactly cheer me either.  I know I’m a bit sad and down at the moment but I do have a pretty positive outlook generally and indeed even at the moment despite being utterly fed up in the face of a set back with my illness.  All these years I have focused on the can do not the can’t.  I’ve laughed nearly every day.  I sought out joy.

My rational, logical brain knows this conversation is nothing to get upset over.  I know for a fact that I can get worse and get worse very easily just by pushing beyond my physical limits. 

Maybe his words of wisdom took that knowledge as a given or maybe his wife’s experience of ME is different to mine.  But I know, from my own experience, that I can be more ill than I am.  I also know that a positive outlook is very important because it’s a lot easier to be this ill with a positive attitude than with a negative one – mainly because I’d probably do myself in if I had a negative attitude.

I also note that he was insistent that something (relevant to UK tenancies) was law when I know it is not.  I told him I thought he was wrong and he said no, definately it’s the law.  So I double checked a couple of sources and I’m right.  So let’s just say as well as being nice and talkative he’s also pretty sure he’s right about everything.

Plus the plumber was only reacting to my revealing I have M.E. from his own experience, as most of us do.  He measured my illness, my life, my ability to recover – from what he’s been through with his wife.  And in turn I measure this myself largely by my own experience – although there are large doses of others experiences mixed in here too.

He told me I want to get to see some proper experts.  Sigh. I wonder still who those might be.  A referral to a specialist will get me CBT and GET and maybe pacing and lifestyle management classes.  I continue to resist these because I’ve kind of been through all of that in the first year or two on my own and I’m certain they will be counter productive.  Which in itself makes me question myself yet again. I resist the professional NHS help because I want to keep myself ill?  But I know I resist it because I don’t trust those delivering the therapy to keep me well or to not risk the little ability and function I do have.

The plumber was being kind.  He was being encouraging.  It’s just that it didn’t quite have that effect on me because my experience and knowledge are different.  Can I be angry with him for that?  Actually I’m upset (or is it angry?) for the unsolicited advice and pep talk. 

But also I remind myself that without people sharing I wouldn’t have access to the tools that have helped me with ME – that includes loose pacing, D-Ribose and LDN.   So what do I do with the hurt and the upset and the anger?

I guess I can blame the ME for making my reactions, my emotions a bit too senstive and unchecked due to this flare.  And remind myself when I am in the plumbers shoes to try and not just measure it by my own experience but to try and look outside of what I know (because I always learn and it always helps).

Not forgetting that sometimes listening and saying “I don’t know what to say” is very valuable too.

Image by knickertwists

Those Symptoms Sound Familiar … Or Is It Hyperchondria?

Am I going to sound like a hyperchondriac if I tell my GP about the “tired cough” I’ve had since I’ve been ill with ME and how I get breathless when I do too much and please can I have a referral for a chest xray to see if I have sarcoidosis?

And I’ve never mentioned it because it doesn’t seem to fit with ME but fatigue, headaches and cough were my first symptoms?

Yep I’m going to sound like a hyperchondriac.

But something about this story in the Telegraph, then subsequent reading about scardoisis, has made me sit with my mouth hung open thinking it could all fit.

http://www.telegraph.co.uk/health/men_shealth/7843500/Sarcoidosis-Mystery-illness-poleaxed-me-and-perplexed-my-doctors.html

“‘It’s possible you have a disease called sarcoidosis,’ the physician told me. I think he was enjoying the detective work, and I felt the same. Sarcoid (doctors use the short name), which sounds like something you might catch from the French president, is an inflammatory disease in which granulomas (clusters of immune cells) appear, most often in the lungs or the lymph nodes, though they can be found in almost any organ. In some cases there are no symptoms at all; in others, all sorts of debilitating disruption is caused.”

Now I know there’s a list of things I’ve wondered about in the past.  The list of stuff others with ME have eventually been diagnosed with, the “do I actually have …” list.

Behcets Disease, Celiac, Chairi Malformation, Chlamydia Pneumoniae, Hypereosinophilic Syndrome, Kleine-Levin Syndrome,  Orthostatic Intolerance, Polycthaemia, EDS and more.  Actually I really wonder about  Chairi Malformation and OI- the others don’t fit so well. But now I can add Sarcoidosis to the list.

The fact that there is little in the way of tests that are readily accessible on the NHS doesn’t help.  So many conditions considered rare (so your GP says “oh no that’s incredibly rare, I doubt you have that”) makes me wonder how rare they would be if people as ill as me could just access the tests.

The silver lining (?) here is that there are limited treatments for sarcoidosis although Prednisolone is effect for a lot of people – but that LDN can also be effective with sarcoidosis and I’m already taking that.

Sigh.  What to do.  I’ve been here before – when to bravely ask for a test/referral and to push or when to not.

UPDATE: I missed a couple of my misdiagnosis list: Sjorgens Syndrome, Lyme, Lupus, Leaky Gut Syndrome and Thyroid (even-though-GP-say-normal)

And, Also

I can finally say I’m free of the virus and have felt things picking up in the last week.  In fact I think I had a LDN induced session of activity which was used for baking.  I made buckwheat biscuits as I’ve been craving crunchy treats as well as some scones for Growler for a treat.

The LDN makes me feel I can do more.  But I did end up with a thumping headache which lasted around 3 days and stiff neck/shoulders which has persisted for 4 or 5 days and is still lingering.

Which is a good time to mention I’ve ordered a TENS machine to see if I can get some relief when the pain is rising above the amitriptyline buffer.  I did try a dose of beloved co-codamol when my head was in full thump and (due to LDN) it didn’t seem to do anything.  It may have made my head worse but it didn’t help.  To the point I was starting to doubt if I had a batch of co-codamol missing the drugs.

The hot wheat bag is a help but does require frequent re-heating and isn’t always the most practical thing. So yes a TENS machine on order, plus a book on using TENS properly and some skin prep cleanser for the electrodes.  Because if I’m in enough pain to want to use TENS I’m pretty sure I won’t have beautifully cleansed skin on which to plonk the electrodes.

I hope I get along ok with TENS but I’ll only know by trying.  The good thing is it’s not just neck and shoulders I can use it for, but for headaches, menstrual cramps and even IBS apparently.

I am slowly getting bits of work done but it’s going slowly with bigger breaks between than I have been used to. But at least I’m getting some done.

My brother’s fiance is coming tomorrow for what will be her third cleaning visit.  We’re also trying to continue the de-clutter and organising.  The pile of stuff to take to a car boot sale is getting massive and somehow I have to get the oomph to organise her, my brother and Growler to actually go and do a boot sale with it all.

The house hunting for a new rental property is picking up and looking more optimistic.  We had hoped that our landlord may pursue an offer from our lovely neighbours to buy the house we rent and keep us on as tenants.  But our landlord isn’t interested.  He has however, in an attempt to secure us staying a little longer, offered a contribution towards our fuel costs until the windows are replaced.  The windows which he promised to replace before we moved in over 6 and half years ago. 

We’re still waiting to see the cheque he promised however.  Perhaps that promise will be as empty as the others. If we do get it then it’s a bonus.  If not nothing lost.

We’ve revisited our budget and made the decision that we’re not going to find the right house AND spend less than we do now even with more efficient fuel bills.  So we’re prepared to pay as much or a little extra if it means we can live somewhere we love.  As I spend 99% of my time in our home it’s important it’s a place I really want to be.

The relaxing of the budget constraints has opened up more properties.  We don’t need another large house but we can’t get a 2 bedroom place with good sized roos.  Anyway there’s more to look at.  House viewings are tiring, even though they are over so quickly.  But there’s a certain emotional investment – anticipation, disappointment, excitment – in it all which makes it tiring I think.

There’s more to say I think but as there’s lots swirling around my brain my cognitives keep failing me.

Bit by bit

My Clutter Buster Angel came for another sort out session this afternoon. 

We tackled the art supplies and materials.  It wasn’t quite a frightening as I thought.  There’s still a lot of stuff but now I’m more assured it’s stuff I need, stuff I want and stuff I use.

Thanks to those who told me how good it can feel to get rid of the stuff that weighs you down without you realising it.  It’s working.

I am so looking forward to seeing the extra space once we’ve finished the first fix (maybe even revisited some “keep me” piles a second time) and my volunteers with pressganged Growler take the piles of unwanted stuff to sell at car boot.  At this moment I’m wondering if there won’t be too much stuff for just one car boot pitch!  We have almost enough unwanted books to have our own market stall.

Still lots to do but I reckon we’re nearly half way through the clutter. Nearly.

In other news I contacted the online medical/doctor service in the UK about whether they will prescribe LDN for my condition. 

They told me that what they need is a letter from my regular physician (consultant or GP) on headed paper which a) confirms my diagnosis and b) “suggests they are happy for you to try LDN”.

I would suggest that therefore this avenue is not an option to get LDN for anyone whose GP or consultant isn’t fully supportive of their condition.  I spoke to my Lovely GP on the phone and she said she would certainly write me the letter they wanted as she didn’t want to be an obstruction to trying something that could be helpful when she knew I had done my research, understood what I was asking for and when it was not a dangerous drug to try.

How lovely my Lovely GP is.  So I’m waiting for the letter to be ready so I can send that off to the online medical people, then pay to register and then see if they will consider prescribing LDN for me if they deem it “appropriate”.  I’m not namechecking or linking to them until I’ve established whether all this fuss is going to get me access to try LDN or not.  But I’m a step closer to finding out. 

This weekend Growler and I are off to visit his family in South Wales.  He’s having Friday off so we can even do something on the way if I’m up to it.  Very exciting.  Fingers crossed.  Anyway I’ll get to see the folks so it’s all good.

I’ve been managing to eat some different things without terrible effects in the last couple of weeks – things outside the IBS crisis diet I’ve been on for months.  Maybe Growler won’t need to take as much special food for me this weekend!

I seem to be going into chatty mode rather than blogging mode so I shall draw this to a close. The exertion of the clutter busting and decision making, combined with brain exertions of trying to make a pop up drawing earlier (which I kept getting the mechanics of wrong) has left me rather exhausted and my brain a bit unreliable.

What Awareness For ME Means To Me

Raising awareness of ME/CFS is something I try to do all year round. As a person with ME it’s not easy to be an activist; to lobby government, drive campaigns, raise funds or do anything very much in fact.  But I think a slow drip-drip effect can be more effective than you might think.

Thanks to the internet I am able to connect with all sorts of people – both those with ME, chronic health conditions, disabilities and those without. Through my art blog, Twitter, Facebook, Flickr and others I can show aspects of an ordinary life affected by ME.  There is more to me than my illness, which helps creates bonds and common interests, so that when ME is a factor it can be surprising, sometimes shocking, to others but it is another little nugget of awareness.

When I do come into contact with people face to face I talk about lots of things but I am also fairly open about the limits and challenges my illness imposes on my life and that of my family. 

So when the hairdresser, or the guy who came to clear the garden say “ME – that’s where you’re tired all the time?” and I tell them how it can affect sleep, stomach, memory/brain function, give you aches/pains and never give you a day off for years and years.  So maybe when ME is mentioned on the news, or down the pub, and someone says “that’s the thing where you stop in bed all day” they may be able to say “actually did you know …”.  Because they met a friendly, kind soul once who had ME and told them how it was more than just tiredness. That’s my hope.

When my local Twitter friends arrange a social meet up and I explain I’ll be there only if I am well enough they start to see how ME affects everything I do or want to do.  And when I manage to attend but am exhausted and ill the next day they get to hear about it first hand and maybe see that it’s a complex illness and see how it really impacts on a life.

hey find out I’m honest, friendly, happy, enthusiastic and kind.  Not some mental case who has imagined an illness.  They get to see how much I want to live a full active life and how ME makes that so impossible.  And they find this out by getting to know me as a person, who happens to have ME.

I’ve heard so many times from family members that when they have told friends or acquaintances that I have ME so many reveal they know someone with ME too.  And in talking about it they spread a little awareness and don’t feel so alone.  Maybe that person will look at their ME acquintance in a different light after finding out more from my folks.  Maybe.

I choose a couple of ME organisations to support and to direct people towards.  For me it is ME Research UK and the ME Association both here in the UK.  I try to keep it simple.  When I can, I do more.  I started the ME Aware blog this year to help inspire other people like me who felt a bit lost with ME Awareness Day/Week/Month and felt helpless to know what one person can do to make a difference. 

Small things add up.  Single voices can form a noisy crowd.

image by moonbird on flickr

OK so maybe my little day to day efforts are not full on driven attempts for getting more funding for biomedical research, or getting clinical guidelines changed to be effective and fair, or making the benefits system fairer for those with ME and fluctuating conditions, or getting the media to stop saying “Yuppie Flu”. 

But it is a drip drip drip of awareness.  And one drop makes a ripple that can reach far and wide.