Culture

“How do you accept being told you will be in severe pain every day for the rest of your life and there is no cure? “

In 2012, after 2 years of experiencing a gradual decline in my health, I was diagnosed with Fibromyalgia. It was a diagnosis I was expecting as I just knew from my symptoms that Fibromyalgia would be the cause but that didn’t make the diagnosis any easier to accept. I felt a small sense of relief as I now had a name for what I was experiencing and I wasn’t going mad, making it up or imagining it. But that small moment of relief quickly turned into shell shock. How do you accept being told you will be in severe pain every day for the rest of your life and there is no cure? I still haven’t accepted it; I don’t think I ever will. I don’t want to either as I refuse to let this illness define who I am.

I lost my job in 2016 because of Fibromyalgia. I enjoyed my job and had worked there for 16 years so this was one of the most difficult experiences of my life and became a very dark time for me. At the same time my friends began to slowly distance themselves and drift away because I wasn’t getting better. You soon find out people only hang around for so long before they lose interest and become fed up. People don’t understand the magnitude of a chronic lifelong illness unless it’s something they have experience of. I was alone, I had no friends with Fibromyalgia or other chronic illness and no family members either so there was nobody to understand or talk to.

I decided to seek out support and advice online and joined a few Fibromyalgia Facebook groups. There were no local support groups available for me to join or meet with so online groups were my only option. I then decided to start my own Facebook page “Orkney Fibromyalgia Sufferer.

In the beginning I did it for myself and it was a place for me to share my thoughts and feelings without my Facebook friends becoming bored or fed up with my constant sharing of Fibromyalgia related content but what I really wanted was for them to understand what I was going through. So I started a blog called “Orkney Fibromyalgia Sufferer” and shared my entries and I received positive feedback from friends and strangers alike.

Writing helped me greatly – just getting my feelings out on paper made me feel lighter. It was like therapy to me and to find out it helped others too gave me a real sense of purpose at a time when I felt I had none. Whilst writing my blog I realised I was also passionate about others suffering from invisible conditions so I created a Facebook Group called “Invisible Illnesses Orkney” and the group has grown slowly but I’m happy with that.

We are a close-knit group of people who share similar experiences and prejudices and it is a safe space for us all to communicate with each other without judgment. I’m particularly passionate about creating a support network in Orkney, not only for Fibromyalgia sufferers but for others with invisible illnesses too. We are a small island community with little access to services and there is nothing available specifically for Fibromyalgia. I have met so many wonderful people through the network I have created and it has cultivated in me a real need to continue building on that and become an advocate for Fibromyalgia and other invisible conditions in Orkney.

Recently I was fortunate to be introduced to Sharon Turnbull and More than Fibro. We are both keen to work together to increase the support and services available to Fibromyalgia sufferers in Orkney and the Scottish Islands. I am excited for the future as I know that, with Sharon’s support and guidance, we can make a real change in Scotland’s remote island communities.

Fibromyalgia, also called fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body.

NHS

Archived articles:

Research Into Fibromyalgia Earns Award for Stefanie Doebl

Fibromyalgia, ME/CFS Orkney Support Group

Image credit Kenny Armet

8 replies »

  1. Hello Thora

    I don’t have Fibromyalgia – but I have health difficulties which mean that what you say chimes with my experiences.

    I’ve found that it appears to be next to impossible for reasonably healthy people to accept/understand that we can’t do things, and how frustrating it is to be expected to. They are being good-natured, asking me to take part and do things, but …I CAN’T! Bar wearing a badge saying “I’m knackered – don’t even ask” ……what can we do?

    Learn to work with it – it is hard for folk who aren’t in this position to see how it is. The old saying of walking a mile in someone else’s shoes comes to mind – often.

    I thought I’d just say – yes …….. I completely understand what you are talking about.

    Example – We had a lovely day Tuesday – I spent Wednesday and Thursday getting over it – still a bit wonky on Friday – but went for a short walk as it was better to get outside. Tuesday was worth it – very much so. That’s how I work it. I manage my time, and accept that, if I have a good time, I will ‘pay for it’! It’s worth it.

    How other folk don’t see how we are – can be very, very frustrating.

    I just keep going, in my own way, explain why I can’t do things. But….well…I also get fed up with explaining! Especially when it’s to the same people, time and time again!

    Someone I know asked do I have ME, as how I am reminded her of ME. I typed up an answer which explained what had happened to me, and have kept that on my computer to send to other folk when they ask, or when they don’t see how it is with me. That has helped as, every time I had to explain it made me feel bad about it. So, I just send them the typed piece.

    Well done – writing this piece – getting it out there. Really – well done.

    I hope you continue to progress with dealing with it – also, do find your own way. Very well-meaning people sometimes go on at me about all kinds of possible ‘cures’ – I know myself, I know my body – I think I have a good feel for how to deal with how I am. They mean well, but, sometimes, even with those people, I have to ask them to stop because going on about it at me, doesn’t help!
    Also, they don’t realise that the effort it would take to do some of these things – trying for these ‘cures’ – would wear me out! What energy I have I want to use for things that I enjoy, and that, in itself, does me good. This may be a mistaken, wilful approach, but it’s what I’m going for, and what I’ve found works reasonably well for me.

    There are things which help – having a good idea of what you’re dealing with is one of them – that helped me a lot.

    This is becoming a very long comment, but I think I’ll include what I wrote to my friend who thought I have ME……..here it is…..

    “Right then – long story short – Fatigue Syndrome, ME, and a few other things, are much the same thing. What doctors do when they don’t know what a thing is, don’t know what to do about it – they give it a name.
    How I see what happened…….Problem with right eye – far too much strong medication – steroids + all sorts. I reacted badly to them – kept being told they were usual side effects etc. and mustn’t come off the steroids as I’d risk major organ failure (!!!!). They hadn’t thought to tell me that, when they started me on the dratted things! Etc. etc. etc.
    So…..Fatigue Syndrome is a mysterious malaise, but is thought to be caused by a weakened immune system, stress or anxiety, or various other things! Again – I don’t think anyone really knows, as it appears to be caused by different things, and express differently, in each individual. The only warning I was give when I was put on the steroids was – that they would weaken my immune system and to avoid getting infections. I asked, at the time, how I was supposed to do that, apart from living in a cupboard. So…..long story short – weakened immune system, all sorts of problems kicked in – major digestive infection which lasted 2 months. Etc. etc. Crashed – severe (suicidal) depression. Finally – changed to a different surgery, different doctor, not so much medication, different approach – beginning of recovery.
    But ……… I’m left with rubbish eye-sight – fair enough – the problem was with my eye in the first place – I think that can’t be helped. But – also, bad back, random muscle spasms, sometimes excruciating! And…tiredness. If I get too tired, I do go ‘down’ and a lot of physical problems kick in again, and I get into a bad state of mind again too. Been to the doctor – she doesn’t have time to listen – says I’ve been off the medication for a long-time, so it can’t be that. To admit that it was this, would be admitting that a fellow doctor was at fault – something they don’t tend to do. She sent me for a blood test. She sent me for an X-Ray. They both showed nothing, so, as far as she’s concerned – that’s that.
    At the last Royal music night, we were talking with Malcom, whose wife couldn’t be there, as she has Chronic Fatigue Syndrome. They were on their holidays, and had been out that day, wanted to go out the next day, so she stayed in and rested that evening. Sounded familiar. That’s how I manage my time, too. Malcolm and I were comparing the symptoms of his wife’s CFS with what I experience. Sounded exactly to fit. Mike and I have looked it up – fits exactly. I think I have CFS. It fits. And the possible/probable reason for it, fits too.
    This piece explains it well:-

    http://www.healthline.com/health/chronic-fatigue-syndrome#overview1

    The only place where I disagree with this description, is when they say to consult your physician – which is pointless as they don’t know what to do about it. Also – where they say to pretty much not do things, since you risk going down again. I may be being silly, but I don’t want to live a half-life, if I can help it – so, I go ahead, within reason!, and then pay for it.
    Enough of this – trying to give a brief explanation, but it’s a big, complicated business. It does kind-of help to at least have an idea of what it is and why. I couldn’t see why I wasn’t improving. I do improve, but very slowly. I couldn’t see why my strength wasn’t building up. Even after a bad illness, it’s usually possible to build your strength up. This is a different matter.
    Also, I’d try to explain to people that the tiredness , isn’t like tiredness, it’s something beyond tiredness, where you can’t function. Malcolm was the first person I’ve come across who understood exactly what I meant as his wife is just the same way.
    I hope to come across someone who gives Healing, as I did. I gave Healing to two people with ME, and the energy flow helped to clear them and put them back on track. One of them has since had a baby! And the other has gone back to being a doctor, which is what he was doing before he got ill. So, some day I might meet a person, or be in place , which will provide me with the Healing I need. Ever Hopeful!

    PS I should also mention the toll it can take on those around you. As I can’t do as much in the house or garden as I used to, Mike has more to do, and he has to work as well. I can’t say how much I appreciate what he does, and the patience he has about having to do so much.
    Whatever it’s called – ME or Fatigue Syndrome – it messes up your life – only as much as you let it though.
    At first, I used to get in a tiz-waz about not being able to do things, then, we both took on the idea that everything doesn’t HAVE to be pristine in the house or tidy in the garden. As to the rest of life – I manage my time, and that’s how I can do, what I can do. And what we can do, together.
    Managing my time, resting when needed, and trying not to worry too much about NOT doing – that’s how I manage it. And how Mike manages it.
    He deserves a medal. Simple as that.
    Some people understand.
    Some look at me, see my big beamy face and hear me jibber-jabbering away, and think I’m fine. What they see, is when I feel up to going out!
    We never know what other folk are carrying with them – it’s taught me that.”

    • Thanks for your comment. I have ME/CFS, Fibromyalgia and a long list of many other related conditions.

      There is very little in Orkney for Fibromyalgia sufferers and ME/CFS sufferers. I want things to change. They need to change. There needs to be more awareness of these conditions not just in Orkney but the whole world. I am passionate about creating awareness for Fibromyalgia and ME/CFS, I am also passionate about creating a voice for us all as well as a safe space for my group members to express themselves and share their experiences with their peers. All my links are contained within the article.
      Please come and join me and my members. Your experience and knowledge will be valued. It’s a safe space and you will be welcomed by all my members. They are a wonderful group of people.

      • Hello again Thora
        Thank you for inviting me to join your group. There are a couple of factors which come into play here. One is – I’m not on Facebook, and, in fact, have an anti-Facebook rant which I won’t inflict on you! I can see that it serves a very useful purpose in some ways, but in many ways, in my view, it does a lot of harm. So, I don’t get involved with it.

        The other thing is – I think that I said most of what I have to say, in that email I wrote to explain how I am and why. One thing I forgot to mention is – when I do have a good day/evening and then ‘pay for it’, I’m not as sanguine about it as I might appear to be– I do get pissed off about that, muttering “Why? Why, just because I’ve had something good, why do I have to feel so bad?” But I know why, and that’s just me, letting off steam.

        I don’t feel a need to join a group – though I recognize that groups for folk experiencing similar things are often a good thing. It’s just not my way – to join groups. Dealing with it, I plough my own furrow, with the help of Mike. Thank all the Gods there are, for Mike!
        If I come across an individual who has similar physical or emotional difficulties, we might talk about it.
        Also, I write of how I am, for example…. https://theorkneynews.scot/2020/05/22/poetry-corner-hurt/

        And….. https://theorkneynews.scot/2019/04/13/the-pit-the-wasteland/

        And, when I write about walks we’ve been on, I mention when, for example, I can’t get across a stile because of how I am – so that others in a similar state will know what to expect on that walk….. https://theorkneynews.scot/2018/09/04/orkney-walksthe-south-ronaldsay-east-coast-walk-last-bit-which-went-a-bit-odd/.
        It might also help some landowners to be more aware of how important it is to think about such things.

        So, I deal with it as best I can. I communicate with folk who have similar things to deal with as I come across them in my life, and I write of it and mention it in my pieces for TON.
        I do struggle, daily, to manage getting on with life. I forgot to mention – just to add to the joy – I also have asthma, which means that I have trouble breathing, too.
        Joining a group, for me, would be one more thing to have to deal with.

        I hope this doesn’t come across as churlish – it’s a good thing that you wrote that piece, and that you are trying to bring attention to how little attention these ways of being, receive.
        There are various groups, and cliques! – that I could possibly be part of, except that…..they would then expect me to …take part and – I can’t – not capable – would wear me out and use energy I need to conserve, to ….live! I don’t commit to going to anything, as I never know if I’ll be able to be there.

        I write – I write for TON to try to help organizations, charities, etc. to get publicity. I can do that, bit by bit, through the day, in my own time. That’s what I can do to participate, so that’s what I do.
        I also write to various Powers That Be such as Governors of Chinese prisons, letting them know that the world is watching them.
        Those are the things that I do – sometimes it feels like too much, and I have been known to take a break from the computer for as long as it takes to re-establish some equilibrium.

        I felt that I should respond to you and explain something of why joining your group, isn’t for me. I hope you can see something of why. I am odd – I don’t fit in with groups. That’s how I am, and, as the song says…. “I am what I am, and for what I am, I don’t need excuses.”
        I do no harm, or, I aim to do no harm! To me, that’s the main thing.

        All the best with the group – it’s needed, but it’s not for me.

        Keep on keeping on – that’s what I try to do.

  2. I completely understand. No offence taken. I started my own group as I found the bigger groups to be a bit of a minefield. My group is small and everyone in it is kind, considerate, helpful and non-judgemental. I do however understand that groups aren’t for you. They aren’t for everyone. Please feel free to follow my blog instead if you like.

    I pay for it too if I overdo it. Which is pretty much every day. I don’t listen to my body and I should.

    I plough my own furrow too. That’s how my blog started. I just read your articles. They are very helpful.

    You can be in the group and not take part. There’s never any pressure to do so. I run it very much with a user focus and I follow the members needs not my own. If I didn’t it would completely defeat the purpose for me. It’s their group. I just created it. If that makes sense?

    I am odd too. I don’t fit in anywhere. I have no desire to fit in either. I have been that way my whole life. I quite like that I don’t fit in.

    Yes, I am the same. Keep on keeping on. Carry on regardless 💜

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