Archive for February, 2011

Tough Fornight

The brain fog is lifting slightly and my reasoning and thinking a little clearer to now understand why this last week, indeed this last fortnight have been so tough.

A fornight ago I had my outpouring of truths about my situation through tears and sniffles.  Turns out (as I should have known then) that the major trigger for this was hormones – specifically PMT.  Not that I regret the outpouring or what I learnt about how I was feeling.

Then the central heating boiler broke down so no heat and no hot water.  Although I had an electric heater the cold slowed me down, my brain was more foggy, everything seemed more effort. Plus there was the anxiety about getting it fixed with Growler’s anxiety about the lack of heat making me ill.

8 days ago I decided to take a quick, basic, but unassisted shower. I figured it was better to have wet hair in the morning and sit in the lounge with the fan heater, than to have Growler help me in the evening and sit in a cold(er) bedroom with wet hait.  Hmmm.

I had to wash my hair that day because the mobile hairdresser was due the next day.  So I wash my hair the day before and have a dry cut or get her to wet it down for me.  Turned out that unassisted shower however basic was bit more exahusting that I gave it credit for. I got through it ok but climbed back into bed for a rest.  Then realised I was whacked. Luckily Growler came home at lunch for something so helped me to decamp downstairs and get me some lunch.  Think it would have been a real battle for me on my own.

The next day (a week ago) both the hairdresser was due to visit and the engineer to fix the heat/hot water.  I was dressed and ready by lunch. Growler was at home to deal with the engineer and I sat waiting for the hairdresser from 1.30pm to 3.30pm. Neither of them showed up. Both had cocked up the appointment.  It took another 4 days to get hold of the hairdresser and the engineer was delayed by another 2-3 days.  So more days without heat and hot water.

The next day I started my period which always leaves me wiped since I’ve had M.E. and tends to make my IBS and constipation worse.  I was wiped.

The last 5-6 days I’ve not been out of my PJ’s which is something that hasn’t happened for more than a year.  It was a shock to the system to suddenly be crashed so badly.  The week has been a write off but at least the engineer did come and fix the heat/hot water.

Today I’m feeling a bit more with it. Even if these stupid PACE trial findings are a stressful way to start the weekend.

Not sure I’ll make it out of pj’s today but feel like I’m recovering and have figured out what it is I’m recovering from.  I think that shower exertion combined with the circumstances of hormones, lack of heating, stress and still recovering from January’s dip was much bigger than expected and it’s taken me a week to get over the crest of that hill.  It used to take me a week on average to recover from big exertions and unexpected things but since LDN I’ve bounced back within a day or two.  Hence why this has been a shock to the system.

I also discovered that we’d been using an old bottle of LDN which was at least a week past it’s best – quite possibly degraded and not working properly for me.  We started a brand new bottle 2 nights ago and hey presto I feel a bit more like I have LDN to support me once again.  It even tastes stronger/fresher/different.  This last week has really felt LDN-less.  Kind of makes me appreciate how much LDN does for me now whatever the reason for this crappy 10 days or so has been.

I’ve also felt that my sleep hasn’t been as good – possibly down to out of date LDN as well.  Which is why Sue’s advice about getting quality sleep with ME/CFS is so interesting. May consider some of these options once my brain can take the information in better.

Amazing how little things can become such a mountain and how little things can make such a vast difference.

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Ha! I knew it. No miracles there.

I love this story in the Daily Mail by Esther Rantzen about her daughter’s ME because so often she’s been used in the media as proof positive that the Lightning Process cures ME and is somewhat of a miracle.  This story shows it’s simply not true.

Not only does Esther’s daughter admit that she was having to force herself through exhaustion to function after the Lightning Process and we’re told that it helped but it didn’t cure – but she’s now discovered she’s been an undiagnosed coeliac all this time.  A condition which certainly seems to account for some, if not all, of her ME symptoms. LP didn’t make her healthy again.

In the years since my recovery in 2006, I’ve been used to secretly feeling I have to drag myself through life, forcing my body to be active and using mind over matter to ‘fake it till I feel it’.” Emily Rantzen – Daily Mail, 12 February 2012

Dragging yourself through life and faking it to you feel it doesn’t qualify as cure in my book yet LP have continued to herald this case over the years as proof that LP cures ME.

Emily had severe symptoms and it was carefully managed hospital treatment and pacing over many many years that got her to a point where she had improved enough to be able to walk.  Only at that point did she try LP and although it gave her an improvement she still had to pace carefully with relapse always a constant threat.  That doesn’t qualify as cure to me and it doesn’t qualify as anymore a successful treatment than using pacing perhaps with CBT which you can get for free.

“… she was imprisoned  –  bed-bound, lying in a darkened room, unable to read, write or even to speak.

At that point she went to hospital, where they pushed her by baby-steps, one word at a time, one more minute of light each day, until she progressed into a wheelchair, and then on to her feet…

And she continued to improve  –  slowly, year by year. But it was through management and willpower, not treatment and cure. As with many families battling an illness for which there is no known treatment, we were offered countless ‘miracle cures’….

Since neither she nor I are attracted by unproven complementary mumbo-jumbo, we politely refused. But when a friend and fellow ME sufferer told us about the positive results of the Lightning Process (a form of cognitive behavioural therapy or neuro-linguistic programming), Emily decided to try it.

It worked, for her, brilliantly. It showed her a way to combat the symptoms that were overwhelming her. So now, at last, she has the energy to catch up on the education she lost, and she is hugely enjoying studying for a degree in psychology. She still has to pace herself – tiredness is a constant background to her life, carrying with it the dread that if she exhausts herself, she might relapse again.” Esther Rantzen – Daily Mail, 12 February 2012

That coeliac disease has played a major part in her ill health and nobody had tested for  before is staggering.  But then we know we’re not routinely tested for such things either as ME sufferers.

It’s not clear yet whether coelic will prove to be the root cause of all Emily’s problems or a contributing factor.  For her sake I hope she finds it is the answer as she can get on with her life knowing her to manage her condition.

But it does raise questions about how many other people have underlying treatable conditions that are just not looked for or noticed.  And how many of those with their ME mis-diagnosis respond well to treatments, therapies and research trials therefore skewing results. I’m not going to get into that right now as I’m not wanting to start off on the “faith in my diagnosis” dialogue again.

What I really want to take from this article though is that LP can’t uphold Esther Rantzen’s daughter as cured by the process any longer.  I guess it won’t stop them from trying or from using it to show they can cure any condition now she has a different diagnosis.

For me after all those in your face articles saying this could cure people like me I’m so pleased to see proof that it didn’t in fact cure her either.  It helped, but it didn’t make her well.  And it didn’t take her from being bedridden to active – the NHS, many many years passing and her own determination did that.

 

Just in case you want to leave a comment saying LP or related therapies are wonderful please note I won’t be publishing such comments so don’t bother. I’m not interested in therapies that want me to risk what little function I have with no proven results and which pays no attention to the physical strains and risks their therapy exposes me to.  My blog, my decision.

Unexpected Truths

So for one reason or another (not important) I had a big snotty crying session last night and had a ME outpouring during which I learnt some interesting things.  Sometimes even when I feel I have a good handle on things when something triggers a big cry it’s like a hidden compartment pops open and I discover all these thoughts and feelings I have about things.

What I learnt last night was:

  1. I am paradoxically basically happy in my core but aching and hurting about my life/ME situation
  2. I’ve been thinking a lot this past week about the improvement of my condition compared to 3 or 4 years ago (my cognitives, communication, migraines, pain, sleep, recovery from exertion, energy levels are all a lot better than they were and at rest symptoms are a lot less oppressive) but realising that this doesn’t add up to squat while I still have my illness effect every apsect of my life including personal relationships, inability to work or be productive and being stuck at home without being able to care for my home or myself.  This progress is almost irrelevant in the grand scheme of things because I’m not really much more functional than I was.
  3. I’ve set myself a sort of vague aim for trying to maximise on the gains that LDN has given me feeling that perhaps I wasted opportunites to build on this in the last year.  I’ve set myself this aim of trying to do gentle stretching and movement with the aim of perhaps being able to go a 2-4 minute walk daily down the line.  I’m giving myself the year to work on this.  Last night I realised that this will be a massive effort and require patience, dedication & diverting of energy from other things to achieve but will also be a relatively teeny tiny achievement.  I can fight for a year and still be only able to walk for a few minutes at a time.  Big wow.
  4. I realised that 2 and 3 indicate a massive resentment about my illness and my situation.  I’m not even measuring myself against 100% healthy when I belittle my improvement and efforts – I’m measuring against my pre-crash levels of ME where I was around 60-75%.
  5. I’ve been montoring myself for signs of despression setting in because I’ve been wrestling with all this crap for say 6 weeks.  I’m pretty sure I’m keeping on top of depression creeping back in, flexing my CBT muscles but I’m dangerously close to that place where you decide to just let the black cloak wrap around you.  I do not want to go back to that place and I will fight what can seem like the easy option to give in to the sadness.  But I recognise that there is a fight there going on.
  6. Not creating art is probably having an adverse effect on my state of mind as I’m lacking that outlet and also the sense of achievement and productivity it gives me.  But equally the state of mind isn’t helping me to find ways to create art.  Hoping that this release of inner bits and bobs might free something up a bit as last night I was having vague ideas about the direction my work could take.  To vague to start painting today but more than I’ve had in the last month.
  7. My husband is under tremendous pressure and my job (as I see it) is to be supportive and to not add that.  My most helpful things are to not cause him uneccessary worry or concern, not overdo things so he has to pick up the pieces and to leave enough energy to listen/encourage/support.  But the strain and responsibilities he shoulders, often in order to allow me to reside in a world where I am protected and cushioned, that pressure on him scares me.  I feel, and in fact am to a large extent, helpess to share the burden with him.  I actively have to add to the load often because I can’t (thanks to ME) do certain tasks, like for instance talk to our landlord, because of the physical response I get to the stress of it.  I am scared for him being under so much pressure and I feel responsible.  Things are worse right now because his job is being made redundant in July and he’s looking for work in a profession that’s experienced a lot of budget cuts so there’s a lot more competition and because he’s not happy anymore in the job he’s doing at the moment.  Plus he’s looking for work he’ll enjoy, will pay good enough to support us both, suitable to give enough to his caring role (so no long periods of time away from home) and therefore preferably local/commutable so I don’t have to find another GP and we can stay close to family.  Feeling stressed about his stress levels isn’t helpful for either of us but that’s what’s been happening like it or not.
  8. My ME, the nature of chronic illness and being housebound whilst also not very productive brings with it a change in how I am.  I relate differently.  I settle into the security Growler offers me in my cushioned world and sometimes I push too much without knowing it. Two years ago my New Year’s resolution was to not volunteer Growler to do things on my behalf. I would say “Oh Growler will drive you there” without asking him using him as a substitute me.  He’s not a substitute me and now he has caring for me to do on top of everything else.  So I have learnt not to do that anymore and to suck up the times I want to volunteer to help and I can’t do a thing. Last year my resolution was to stop picking away and being negative.  I thought I was being devil’s advocate or helping things/Growler to be or do things better by saying “Yer that’s good but why don’t you …”  I was actually undermining him, micro-managing things and not trusting him to do it right.  Not because I didn’t think he was capable but because I was living out a part of my life through him.  I was trying to do a task with him by negotiating how we would achieve it – but actually I was driving him mad and not letting him get on with things.  I had to learn that when someone else has to do the job you have to let them do it, you have to let go and let them get on with it.  Growler got really angry last night because I was doing this again but really I wasn’t and really he was angry with work and himself and the world being unfair and all those frustrations that get bottled up and explode in the face of someone you can explode in front of safely because they love you.  But it did set me thinking about how I may in other ways still be trying to live a part of my life through him and how I need to address that.  It’s hard because it strips away another layer of leaving you helpless, attempting to sit serenely while others “do” instead of you.  I want to cry just thinking about it. This illness leaves me with so little already losing anything else hurts.  But keeping my marriage happy and healthy is even more important.  As is finding strength and usefulness and peace of mind in the right ways and not from living through other people.  I can’t put my finger on what it is I need to work on but I can keep my ears, eyes and heart open to find it.  And in the meantime try not to let the knowledge that the way I relate to the world after 4 years sitting at home is drastically different to how I used to be.  By example I offered help to Growler with job applications and his CV but suggested really he should ask friends and colleagues because I am now so out of touch with the ways of the world out there beyond these walls.  It’s gone from a world I am seperated from to a world I don’t really know.
  9. Finally a heartbreaking moment from last night’s outpouring.  We spent the evening with my dad and his partner at the weekend and stayed overnight.  Something he said to me, which I now forget but which isn’t important, triggered a notion that he really doesn’t understand what my life is like.  He really doesn’t realise how every moment of every day is restricted, limited and ill.  That it never ends.  That I continue to exist with ME, stuck at home, even when he’s not thinking of me and when life is carrying on.  Then I realised that no-one (except for PWEM and maybe Growler), no-one in my family, of my friends, no-one really knows what it’s like and how I live.  The crushing reality of it all.  The not knowing.  The time stretching back of day after day.  And then the crushing moment – they don’t want to know because it would be heartbreaking.  It is crushing to consider the reality, the relentlessness of it all.  And in truth I don’t want them to feel that and I don’t know that it helps anyone.  The majority of the time I don’t consider it as anything other than normal, typical.  I just live the life I have and am not oppressed by it.  Because if I stop to look at it really hard it crushes my heart and my spirit. But it leaked out yesterday – the pain of this situation and of the knowledge that it might always be this way to a larger or lesser degree.  I’ll never be who I was again.  I’ll never fully be able to do whatever I set my mind to because there will always be limits to be considered.  I’ll never fully share the burden with Growler.  I may never get back to being in the big world again.  Here’s the silver lining though – emotionally I am far better person that I used to be so why would I want to go back to who I was?  Only the physical possibilities are what I want back.  I have learnt so much about myself, life, others, compassion, patience, acceptance and that who we are is more than what we do.  It doesn’t stop the burn of the relentlessness of ME but it is some consolation.
  10. Finally last night’s outpouring reminded me how much I love my husband, how much he leaves me and how a good old snotty cry can be most educational.

Thank You Ian Swales MP

Cross posted from my more public DizzySky blog where I talk about non art stuff, including ME/CFS. Whereas here I tend to advertise this chronicallyme blog amongst PWME only.

A thank you email I sent to Ian Swales MP in response to the Parliamentary debate on ME 2nd February 2011 as well as his EDM 778 on ME Research

9 February 2011

Dear Mr Swales

Although I am not one of your consituents I just wanted to write to thank you for your comments in the debate on ME/CFS on 2nd February 2011 as well as for EDM 778 on ME Research.

I was diagnosed with ME/CFS 4 years ago but have been ill with the condition for at least 6 years. Although I would now describe myself as a moderate sufferer I am still housebound, unable to work, unable to attend to basic self care needs and a long way from living what would be considered a normal productive life.

It took nearly 18 months of seeing GP’s in my practice before one gave the ME/CFS diagnosis which allowed me to address the downward spiralling of my health so that I could rest and begin to pace. Knowing the nature of the illness I had allowed me to make small gains in improvement but by that time I had lost my job leaving my husband to have to juggle caring for me and working full time. I know first hand the prejudice of many GP’s against ME/CFS. Their ignorance or arrogance devastated my health and my life.

I have managed to access medication privately from 2009 which has helped me regain some function and relieve some symptoms so long as I continue to carefully pace and manage my condition. This private medication came as a result of my own efforts and research. Although GP’s can prescribe this medication off licence for ME/CFS my practice would not allow it.

My GP is helpful and supportive but not proactive and not able to offer me much in the ways of NHS treatment other than attempting to manage symptoms and to offer CBT and GET (two management strategies I decline after bad experiences with local physio’s not understanding my illness and already having CBT skills I use day to day).

Whilst the Minister for Health Care Services, Paul Burstow, stated in the February 2nd debate that the NICE guidelines are merely guidelines, in practice they limit the options that GP’s may either be able or willing to explore.

The issues you raised in the debate are so important to me. Research, biomedical research, I think has to be the key to moving forward both in establishing diagnosis and treatments. There are already clinical markers that when considered together could diagnose ME but the NHS seems to want a single, inexpensive and uncomplicated test for what is a complex condition.

Being a ME/CFS patient I am well aware of the splintered and often angry responses to debate about ME/CFS and that for many it makes them wary of speaking up on behalf of sufferers. So I wanted to thank you for your efforts and to know they do not go unnoticed or unappreciated.

Where once I worked and was an upstanding citizen, now I sit at home waiting every day waiting to feel better, waiting for new treatments, waiting whilst life carries on without me as a significant part of it. I am invisible to the bigger world most of the time. My fear and anxiety is palpable that I may lose my DLA because of changes to an assessment process where my condition is already not a good fit for the prescribed tick boxes and scoring systems of benefits.

Day in day out I have to contend with my illness and make best efforts not to let debility worsen. Every minute of every day for at least 5 years I have been and felt ill. There is never a respite.

I do not have the energy or function available to fight to raise myself and others out of the plight we find ourselves in through no fault of our own. So when someone, like you, is willing to speak for me it means more than you can know.

Thank you

Rachel Groves

For those outside the UK where the BBC iplayer clip of the debate may not work there is a transcript of the debate.

If I can’t get any support from my own MP I may as well do my bit to encourage and thank those MP’s willing to stand and be counted with us PWME’s (Persons with ME).

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.

I Want To …

**Mini Rant Alert**

Things I want to do but cannot do for various reasons relating to stupid M.E. despite them being semi-plausible…

Want to (in no particular order):

Have a bath, be clean & dressed everyday, eat whatever I fancy, exercise, sleep sleep sleep, go out somewhere for fun, get a haircut, earn some money, make some art, take my Holga out, meditate, have a chat, do a little housework, have sex, finish putting the front room curtains up, prune shrubs in the garden, lose weight, swallow my pride, diversify my work, do nothing whatsoever.

Not to mention the biggies that are less plausible right now…

Biggies (in no particular order either):

Care for myself, start driving again, be able to go out independently, get a job, buy a house, have a family, get fit. Be well.

 

There’s nothing like having a flare/crash/relapse (whatever this is) to get you thinking about all the things you can’t do.

It’s not proving very useful to plan what I could do if I felt better when I’m not feeling better.  But I can’t seem to switch those kind of thoughts off.  I’ve still not learnt now to deal with dips well it seems.  In fact it seems I’ve still not accepted I am even in a dip.

 


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