The Drugs Don’t Work

So Folkarinos, how’s it going in the land of the living?

I had been planning to write a piece on crippling, agonising self-doubt as I had been going through one of my phases of wondering whether this disease is all in my head. That maybe I needed to try a little harder, that this is perhaps ‘just’ depression… but in the past week that self-doubt has vanished (again) with my CFS/ME reasserting it’s total control of my life.

As you know from my last post, I had been starting to feel a few benefits of being on ‘The Drugs’, so I set to doubting myself as is my periodic want. As Dave says, “we keep having these cyclical conversations and I’m sure we’ll have them again in another few months”.

To be clear, the majority of this self-doubt comes from the almost callous indifference of the medical profession.

I am not nearly arrogant enough to think I know all about my illness, especially as there is so much (contradictory) information out there with new lines of research being released all the time but I do try… And paranoia or not, you know how you just know when someone isn’t believing you, taking you seriously, or at least just doesn’t get what you are talking about? (ladies in professional jobs with a lot of guys, I expect you can relate to this feeling) …

Well that’s how I feel when I’m trying to talk to my doctor trying to get her to ‘treat’ me in any meaningful way.

Despite asking, nae, begging for help and regularly (every three months as advised by Action for M.E.) telling my doctor of my symptoms and struggles, I have not been offered any actual treatment since 2014… except antidepressants of course. I read other people’s blogs, stories and comments all the time about getting referrals to rheumatologists for their pain and neurologists and various tests being done to regularly check that their bloods have stayed the same and they are not showing any new signs of thyroid issues or arthritis for example. I don’t get any of that.

A while ago (I can’t remember exactly when) I made a data protection request from my GP for my records. I had seen that a new agreement had been signed up to, the Scottish Good Practice Statement on ME/CFS and I wanted to check whether my doctor had done all the things on it, or not as the case may be. I paid my £50 and got my records but of course I didn’t have the energy to go through them and they were annotated in such a way that I didn’t understand the bits and pieces I could read anyway.

Interestingly when I mentioned this to my doctor, she quickly hurried through the list and ordered a vitamin D blood test, which showed my levels were dangerously low… hardly a surprise for someone who is mostly housebound. If she missed this, I thought and still think, what else is she missing? What if something changes and I develop, for example, gastric damage from continual acid reflux? What if the chest pain I experience is from chronic overuse of NSAIDs?

I think this is why I must sound like a hypochondriac sometimes but my frustration at being essentially ignored, is real. I am left to cope on my own as the changes in my condition are never investigated and hardly even listened to, but god forbid you should criticise them…. (I wrote a complaint about my previous GP in this regard and rather than it being dealt with by the practise manager, I received a combative phone call from the GP in which he forced me to write a letter of retraction/apology, for fear of being expelled from the surgery! Then my GP was changed. I have given up challenging them since and resorted to just keeping them informed).

I periodically get angry, upset and hurt…. Then the self-doubt kicks in Does she think I am lying? Does she think I am just attention seeking? Does she think I am less worthy than other patients? Do I bother her or take up too much of her time? Does she think it’s all in my head? Is it, in fact, all in my head?!

That’s why I can’t talk to her, that’s why I get nervous flustered and stumble over my words.

I want to be clear here, there is no ‘just’ about mental health, I am not diminishing it in any way. It is equally devastating and harmful as any physical illness I have ever seen. In fact, it would probably be easier for me if I did have a mental health condition and only a mental health condition. It’s something I could learn to live with and work on. But the problem for me is that, if it were a mental health condition the drugs that doctors want me to take should work and they NEVER do.

And so it was last week, my sixth week of being on ‘The Drugs’, as my self-doubt melted away yet again, my physical symptoms spiralled out of control and I had to spend two days almost entirely in bed.

The hypersomnia, that is almost like a drug state in itself, took me to that weird delirious nightmare place on Wednesday morning and I didn’t really come back to earth until Friday.

Lorraine our cleaner had been and gone, had the hoover on, probably talked to me and everything but I didn’t remember her being there. I just saw that she had been and cleaned.

I tried to push myself to catch up with some chores on Friday and was almost crying in pain by the end of the day. Then my bottom half and back totally seized up and I went into that tottering robot walk phase. I felt so ill.

Over the weekend the dreaded yellow liquid poops came back, along with more terrifying nightmares, vomiting and not being able to keep my food down. This was finished off by an almost completely sleepless night last night, because every time I started dozing off and my throat relaxed, I regurgitated saliva, acid, whatever up into my mouth. I don’t actually care that much about being sick a lot, I’m sort of used to it I just dislike the uncomfortable feeling like something is stuck in my throat or my chest and I find it frightening when I accidentally breathe in some of that liquid and experience a choking sensation which jolts me awake just as I have fallen asleep.

I’m shattered. I’m so hungry today but I know I can’t eat. I could barely get down a cup of tea this morning and I can feel that lump there, waiting, lurking, the puke will be real.

On the plus side I feel mentally fine about all this, like I can probably exist like this for a while and not jump out the window so I guess ‘The Drugs’ work from that point of view.

See ya!

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What a Month Part 2 – The Revenge

Well, it has been much longer than a month actually, it has been closer to two and a half months and I’m still not sure that I’m coming back to life. I mean, I think I am but I’m really not completely sure.

As per my brief updates, which were very difficult to deliver and very ‘samey’ so not that interesting to read or write, it has been a horrendous time. This has probably been the worst crash/relapse that I’ve had in two or three years… Again I can’t be 100% sure because my brain is still a bit foggy and prone to mistakes but I think this may well be the worst crash I’ve had since the end of 2014/beginning of 2015. That lasted for eight months and was the last time I gave up full time employment.

Side note – Oh my cheesy effing peeps! I am going to be correcting so many stupid typos in this piece! Stupid blummin’ M.E. brain!

I want to write a piece about agonising, paralysing self-doubt but I need to write this one first about how things have been, what is good, what is bad and what is kind of the same.

Over the past two and a bit months, I have shut out everyone. Friends, family, everyone except Dave. I’ve had to. I have been more ill than I have in years because I completely overdid it in July and that caused a massive bout of post exertional malaise to set in. I had hoped/intended to share that part of my life because the whole point of the Real ME was to shed light on this disease, how debilitating it is, how hopeless it can be. But I couldn’t do it justice.

There were two reasons for this.

1 – There is so much awful stuff happening in other people’s lives. Another ME’er was struggling with her own support system being taken away, as her dad and husband were both ill in hospital. A friend who I care about a huge amount, even though we hardly see them was rushed onto dialysis and is very sick but still working full time……I couldn’t really talk about my problems when I felt they paled into insignificance. I felt that my ‘gritty reality’ had just turned into whinging pish. I felt like a fraud when these people are out there getting on with their lives so bravely in the face of the very real possibility death.

2 – I was angry. I was not proud of myself for this and so I became more and more closed off.  I found that despite the plethora of stories just like mine, all the information that can be read, including the 30,000 odd words that I myself have written on the topic, people did not understand what I was going through. They weren’t even kind. They didn’t even want to understand. I felt rejected and misunderstood. I was hurt and confused.

This is tough to write because I have not been able to talk to the people who have hurt my feelings over the last couple of months, people who I have tried to be there for in the past, in their darkest times. And I’m not just talking one or two people either, I am talking the closest four or five people to me, or so I thought. I realised I was alone. Alone, angry and bitter.

I don’t want to talk to them about it now either. These are people I love so I’d rather just move on and hope they come back to me at some point.

Sometimes I’m unsure if they realise when they are being ignorant or if I’ve imagined it or blown something out of proportion. When I’m exhausted, sick and frustrated my mental health takes a complete nosedive. I am a sensitive soul anyway, a bit of a weirdo and all that but when I’m very ill physically, I get anxious and paranoid too. “No one cares, or they wouldn’t have said X, or they would have dropped me a text or they wouldn’t have asked me to do Y” and so on…

I thought perhaps I had slipped into depression but David convinced me last night, that I haven’t been depressed as far as he can tell. “Because”, he says, “I know the difference with you”, but I have definitely not been my usual self either.

Sometimes M.E. is a battle of will.

I think that’s what the other sites focus on with all the ‘stay positive’ stuff… but that’s just not realistic for me, well not all the time at least. I have to let the darkness out from time to time or it just eats away at my insides, festers and gets worse. And I’m best locking myself away when I’m doing that cos it’s not nice, not for me or for anyone else.

I needed to protect myself. To focus solely on self-care, on my routine and on finding a way to make my life bearable again. I haven’t done any writing and I haven’t done any work on trying to progress the business plan. I feel bad because Sammie had started a draft of the website for me but I have had  to just keep my focus on this very narrow field.

So I am now 29 days into taking ‘The Drugs’ and as you know the first couple of weeks of side effects were rough. I spoke to my doc a couple of days ago about it and have agreed to carry on because the norepinephrine reuptake part seems to be giving me a bit of a boost for a few hours a day. I’m feeling optimistic and have a million plans of stuff I’d like to do but I am trying to remain disciplined as Dave said just last night “We have been here before, do not rush!”

It’s not all plain sailing, but I struggle when communicating with my doctor because I think she doesn’t believe me or at least that she believes it’s a functional or conversion disorder rather that a physical neurological one so I tend to get nervous. I babble and stutter, then try to fit it all in when she clearly does not have the time or the inclination to investigate further. So, I’ll lay it on you all instead! Ha!

Stuff that is good:

  • I am less anxious and angry
  • I am alert for around five hours a day from roughly 11am – 4pm
  • I can use the uncomfortable edgy feeling it gives me to push myself through the fatigue to do my baseline plus the odd other task.
  • I have a little more stamina and can stand up a little longer
  • I am keeping up with walking round the block 3 or 4 times a week. I still feel sick and drained at the end but I can and am doing it. To be fair though, I started that two weeks before the drugs.
  • Less nerve pain. Muscle and joint pain still present but no nerve pain especially at night.
  • My memory and wit are a little sharper. I’ve started making little quips that had escaped me.
  • Almost no PMS (my PMS usually sends me to bed for at least one day a month as per previous post)
  • I have lost half a stone
  • Less dreaded yellow liquid poops!

Stuff that is the same:

  • I am still extremely tired all the time, I mean I say tired but we all know it’s not just ‘tired’
  • my sleep is still completely unrefreshing. It doesn’t matter how long or how short my sleep is, I always feel as though I’ve had none.
  • I still fall of a proverbial cliff around tea time and am desperate to go to bed by about 8.30pm
  • The Botox I had in June has worn off so my headaches are back along with the excessive pressure in my temples and whooshing in my ears along with occasional tinnitus.

Stuff that is bad:

To be Clear – most of these are things that I get with M.E. anyway but they seem to be exaggerated or heightened at the moment.

  • I am very sensitive to noise and light. I get this anyway especially in shops but now even the sound of the TV is bothering me. Silence is golden and darkness is a relief.
  • I am emotionally very flat. I feel expressionless. There is no low, which is great but no high either.
  • I am easily distracted, disorientated and clumsy. I keep burning and cutting myself in the kitchen accidentally. I dare not turn around to quickly or I will get the whole room swaying about and have to catch my balance.
  • Inability to concentrate and/or take things in. Hence, I’ve not been writing or studying or working on the business plan. This piece is a monumental effort and has taken 3 hours so far.
  • Profuse sweating one minute then freezing cold the next. Hot body, icy feet. Zero temperature control.
  • Pounding heart, especially at night. A dull aching in my breastbone.
  • Although I fall asleep relatively easily, I cannot stay asleep. I wake up at least four or five times a night.
  • Stomach pain, bowel cramps and spasms
  • Trouble weeing/not knowing I need to go and then leaking (I think this is purely ‘The Drugs’ as this is a completely new thing). I have started wearing a little daily pad.
  • Regurgitating food and drink (i.e. being a little sick into my mouth) especially at night, several times. It’s one of the things that wakes me up and is very unpleasant.
  • Outright vomiting. On Sunday and Monday this week, I couldn’t keep any food down at all.
  • My appetite generally has gone. This however, is contributing to the weight loss so I actually don’t care that much (in fact I’m happy about it). David however, is not happy LOL.

I guess I’ll leave it at that for now folks and I will try to write something proper a bit more frequently than I have been doing but no promises, OK?

If any of you guys want to write about anything, please do. You know I won’t censor any of it and I’d love it if the page was a bit more community driven.

Love you guys and special thanks to Linsey for ‘just getting it’

I Love This Page

Good article and Laura’s Pen is a great page!

This is interesting, looks at the damaging effects of claiming positivity as a cure/ the reason people survive cancer etc versus the positive effects of optimis

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I’m Struggling

Hi guys, sorry I’ve not been about. I can’t really write the proper piece Ive been wanting to at the moment as I can’t concentrate or organise my thoughts. It’s taking me all my strength just to do basic stuff.

I have been very sick since starting the meds, which although they allow me to be a bit more alert for a few hours a day, are wrecking my stomach, giving me sweats, pounding heart and disrupting my sleep even more than the M.E. does already. They have not helped with the pain as promised so I’m still on a concoction of ibuprofen and dyhydrocodeine.

I feel very sick and I know this is a bit dramatic but I honestly feel as though I may be dying. I won’t of course, this disease just seems to go on like this forever.

I’ve been waking up in the night being a little sick in my mouth and have had acid reflux and heartburn every day – so painful. I cant keep my food down or finish a meal. I’m exhausted.

I have persisted with the walk round the block but far from getting easier, it seems to be getting harder.

This is really just a quick update to express that things are not going well physically and as is often the case with M.E, people that have it know the day in day out suffering and people that don’t can’t get their heads around this part because this is when they don’t see us or hear from us for months on end.

Speak to you when I can.
J x