I’m Sorry I Haven’t a Clue

Radio 1’s* average listening age is 32, Radio 4** – 55. Which do you think as a 36 year old I listen to? Aficionados of one will know from the title! Yes, Radio 4. I rarely listen to Radio 1, I find it quite irritating! Yes that makes me old for my age, well at least that bit about feeling old for my age happened before I started staggering around like a 90 year old because of M.E.

There is a program on Radio 4 called, as above, ‘I’m a Sorry I Haven’t a Clue’. They call it the antidote to quiz shows. When a contestant doesn’t know an answer they say – I’m sorry I haven’t a clue! This is what I feel like saying on a daily basis when faced with questions by others or myself about my M.E.

I’m not alone. In the last twelve hours the following questions have been asked on M.E. forums on Facebook:
1. Since menopause my symptoms have gotten worse – has anybody else experienced that?
2. Has anyone tried Ritalin for cognitive impairment?
3. Has anyone tried Gastrodin?
4. Has anyone tried Peony Immune?
5. My daughter has worms and the doctor gave us Vermox to take, including me. Does anyone know why my symptoms have temporarily, completely disappeared?
6. My wife has M.E., do you mind telling me how severe you are and what meds you are on so I can understand how severe she is?
7. I take Gabapentin for my sleep, it gives me very disturbing dreams – does anyone else experience this?
8. I get very bad anxiety attacks where I can’t breathe. My doctor wants to give me anti-depressants, I don’t want people to say my M.E. is in my head, what should I do?
9. Anybody have any tips on sleeping at night? I don’t sleep for more than 3-4 hours a night.
10. Has anyone had any trouble swallowing?
11. Does anyone know where I can get a badge that says, ‘I have an invisible disability, please be patient’ people think I’m slow or crazy but it is just my brain fog.

This is just a sample of questions posed by M.E. sufferers, re-read them though, they reflect the wide spectrum of concerns that patients / carers have: sleeping, cognitive ability, pain, work, living with an invisible illness, society’s perceptions of us, worry for a loved one, hope and fear.

Each question has many, many responses as the M.E. community jump into action to support each person, reassuring them that they are not alone, advising them from their experiences, thanking carers for being so supportive etc.

Despite this though, the questions keep coming and the reality is none of us to varying extents have a clue about what is going on and what to do. So we support each other as much as we can.

If I could find somebody with all the answers, I would want to know – categorically what is making me ill. I imagine it would be easier if I knew what was inside in me, making me feel like this. If I could pinpoint a chromosome or an organ and say, ” hey you, you are responsible for this!” I imagine it would make me feel better.

I would want to know how to pace myself. Doctors, physios say don’t go beyond your abilities. How do I know where that line is without going beyond my ability?! I want to know whether the cinema, theatre, foreign holidays are good ideas without having to catastrophically discovering that their not by doing them!

I would demand they tell me whether I will be part of one of the two 25% clubs. One composed of those who recover more or less completely and get on with life. The other sufferers who become permanently and severely affected. They need to tell me what I need to really do to become part of the better group or at the very worst not become part of the other.

Somebody needs to make it clear what my timelines are. At what point will I start to get better or worse, at what point will / won’t I have enough energy to do x, y or z. This lack of clarity is so frustrating. You can’t plan ahead because your ahead could be very different to your today.

If they could tell me my timeline, I would want them to tell me exactly what I have to do to make the journey easier or the direction more certain.

I would want to know whether I can trust what my doctors and medical specialists tell me. My physio has given me exercises to do. I only got them a week ago. Since then, everyday I do them (on a good day) I seem to have a bad day the next day – is that a coincidence or am I doing damage to myself? I’m sorry I haven’t a clue.

They need to tell me whether I will ever work again. If I do, will I be able to work as a teacher or will I have to find something else? If I’m a teacher, will I have a career, will I be able to work full time?

Most importantly, I would want to ask them – what is the cure?

The reality is though that when you ask medical professionals these questions, they have a particular way of raising their shoulders and saying, “sorry, I can’t say.” Just say, I’m sorry I haven’t a clue, it would be much more accurate!

So it is to the forums and support groups that I will return for they seem to say, “I’m sorry I haven’t a clue but try this it might help.”

* national radio station in the UK, general plays pop music, light news etc
** national radio station in The UK, serious news, talk shows, highly respected

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13 thoughts on “I’m Sorry I Haven’t a Clue”

  1. One of my friends (coincidentally also a teacher) was one of the first in the country to have ME eventually diagnosed apparently. He retired about 3 years ago and within months of retirement he was diagnosed with Parkinson’s which has been really difficult for him. We were chatting last week (although life is busy I try and make a conscious effort to keep in touch – time passes in a very different way for different people and I want to be a randomly occurring bright spot!)

    He is positive that his ME and Parkinson’s have a link. The pain, the inability to control his body (fighting to make it do what he wants leaves him tired and achy)

    I don’t know if there’s any ‘Parkinson’s help’ that then helps ME as well (apart from don’t kill yourself trying to be invincible!)

    Just to remind you I’ll keep sifting for nuggets in the random idiot savant way my brain puts things together! P

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  2. Hello Karen,

    You asked if anyone has experienced symptoms getting worse due to going through menopause.

    I’ve researched this and found the following paper ( which I’ve summarised on my blog ) http://mecfsblog.com/2014/03/04/deciphering-the-research-cfs-and-gynaecology-chicken-or-egg-more-research-needed/

    I’ve heard people say their symptoms improved after going through menopause as well as get worse.

    What this paper says is that the reduction in Oestrogen that occurs after menopause can mimic or be a potential reason for ME CFS type symptoms.

    I found that interesting. I will be discussing whether my Oestrogen levels can be checked with my GP.

    You also asked about anxiety and antidepressants.

    When I was in my ME Meltdown I suffered hugely from anxiety which my GP prescribed SSRI antidepressants for. I got to the ME Meltdown by not being treated or advised properly in the early 9 months of my diagnosis and trying to carry on as normal. I was desperate and took them.

    One of the reasons why my GP suggested the prescription is that the NICE guidelines state that SSRI’s can help with ME CFS ( along with GET and CBT ). Also, as my GP said: ” I’m a doctor and we like prescribing things.”

    I took 5 mgs for a while but they worked like a chemical cosh. The effects I noticed was that they increased my fatigue considerably however my optimism also improved.

    I found out that I was hyper-sensitive to SSRI’s. I could only tolerate 5mgs which is not a psychoactive dose ( one that the research into the drug indicates starts to improve symptoms pharmacologically – with an average person this starts at 10mgs and increases to 20mgs or beyond). I felt like I was constantly sedated.

    The ME clinic advised me via letter that people with ME CFS are very often hyper sensitive to serotonin based antidepressants. They did not explain why.

    I’m not sure why is important to know why when you are faced with making a choice to manage your symptoms. It was my choice to stop taking them after 10 months I felt stronger and I can honestly say that for me it was the right decision and I haven’t looked back.

    When I stopped taking them and started to restructure my life to accommodate my illness I felt that this was effective in the long term. That included making some ‘difficult choices’ – at the risk of sounding like David Cameron – but it was those very difficult life choices that have worked.

    Of course this is my personal experience only and shouldn’t be taken as anything other than that but I wished in those moments I had someone to talk it through with so I hope this helps you a little bit with your list of questions. If you want to talk about this more, that’d be fine – drop me an email.

    Take care !

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