Category Archives: Fibromyalgia

When we stop talking about our pain

The other day, I read something that really struck home:

“You don’t learn to live with pain, you just learn to stop talking about it”

When an injury first occurs or before a chronic illness is diagnosed, we talk about our symptoms, if they’re worrying us, we have no problem saying “I’ve got a splitting headache again” or “My tummy ache’s not going away” or “The cold really affects my joints” but once you’ve got a diagnosis and are managing (with medication or otherwise) as best as you can, there seems little point to keep going on about it…this is something that seems to happen naturally but it’s a tricky thing that isn’t always the best thing.
One of my husband’s friends was having terrible back trouble a while back, as fellow Christians we were praying for him as he made decisions about treatment including the possibility of invasive surgery. After a while, I asked my husband how his friend was, he said he didn’t know – we didn’t know if that was because his back was better (unlikely) or he’d just stopped talking about it.
I have chronic pain in my neck, back and shoulders and have done for many years. This is due to spondylosis in my spine and fibromyalgia affecting all joints and soft tissues. Spondylosis is diagnosed with MRI and is a degenerative bone condition causing pain, including periods of inflammation and osteophyte (bone spur) growth, which press on nerves etc. Fibromyalgia is a condition diagnosed by ruling out all other connective tissue disorders which causes tender/trigger points and generalised pain and fatigue. I also have arthritis in my ankles which causes pain with every step I take.
I used to complain quite a lot, the conditions I have are difficult to manage, especially in someone “so young”, as my orthopaedic surgeon told me! I take regular pain killers, do physio, do regular exercise, get regular sleep and do relaxation techniques.
The other day my husband asked how my pain was, commenting that I’d not said anything about it for a while. I said that it was ‘as usual’ – I hate complaining, and I hate lying so it just is what it is!
I have come to realise I may have a low pain threshold (ie I feel pain sooner than someone else) but I have an incredibly high pain tolerance – I can put up with a lot of pain and still go about my daily life, not that it doesn’t bother me, just that I don’t let it stop me. This, of course, take a lot of energy which contributes to the fatigue I get anyway!
I find it difficult to talk about my pain as most people, when they hear about it, want to help in some way, or at least say something useful, sympathetic or supportive. But there isn’t really anything anyone can say or do to help. If I do mention it, it generally feels quite awkward and I defer to lying, along the lines of “it’s fine, I’m managing ok” or “I have good days and bad days” – which is technically true but my good days are still about 5-6/10 on the pain scale…
Normal for me is pretty bad but who wants to hear that every time I see them?!
If I don’t talk about it, people don’t realise that I’m suffering, assume I’m fine and don’t understand when I need to leave events to go to bed, if I’m distracted or if I don’t offer to help (set up tables, move chairs etc). I worry that people won’t believe me because I ‘look normal’ or they will just think I’m lazy or a flake!
The thing is, I can act normal, as I did the other day in breakaway training at work, but I pay for it afterwards. That evening, I could hardly think, my head felt like it was completely split open, my shoulders and arms were stiff and I coulnd’t move them without excruciating pain. Hot pokers and crushing vices could probably reproduce the pain fairly accurately.
I have read some fabulous books by Paul Brand and Philip Yancy about how we’re meant to listen to our pain, not get angry about it or wish we didn’t have it – it tells us something is wrong, if we didn’t feel it we wouldn’t pull our hand away from the flame or take care of a brewing illness.
Unfortunately when it comes to fibro, the thing that’s wrong is the pain communication system – this means, I feel pain when I shouldn’t. Pain from spondylosis is due to physical degeneration or deformities – I listen to my pain and do not push my body beyond it’s limits too often but it’s incredibly frustrating when my brain is active and wants to be doing, but my body just can’t.
I’m not looking for people to feel sorry for me (that’s fairly pointless!) – I’m just saying it how it is.
So it’s a difficult balance, talking about the pain doesn’t solve anything and makes other people feel helpless or awkward, not talking about it means people don’t know the truth, may think I’m rude or acting strangely.
So, perhaps we should try to remember, if someone has a chronic condition, no matter what it is, diabetes, arthritis, mental illness, bowel or kidney disorders, they are managing it every single day. They may not talk about it but that doesn’t mean they’re fine, it doesn’t mean they’re not suffering just as much as when they do talk about it, all it means is that today, they’re not talking about it.
Sometimes I wish my conditions were more visible but most of the time I’m glad I can choose who I tell. I guess, my health is my business and I maybe I shouldn’t worry about what other people think.

I'm taking on a challenge, 1 step at a time!

Some people, more than others, constantly set themselves challenges…there may be no reason for this, other than, “just to see if I can”! For me, it’s been running. I started running as a teenager and have done it ever since. At uni, I was not up late at night partying, but when suffering from insomnia I would go for late-night runs to clear my head or just for something to do! I’ve enjoyed many-a 10k race, tried a multi-terrain type thing that was a giggle and done a couple of half marathons.

For the last few years I’ve found running harder and harder. It’s never easy to go for a run when it’s cold or raining but even in the good weather my body has complained, my hips ached, I’d get sharp pains in my ankles, my head throbbed no matter how hydrated I was and at times it feels as though ever cell in my body was crying to stop. Instead of the exhilaration I used to experience, when returning from a run I’d just feel exhausted. My brain was willing but my body was not. I’ve had breaks, thinking I just needed to rest for a bit but every time I went back to it, I just couldn’t get going.

Since I was a teen I’ve dreamt of running a marathon, would I have to give up on running before I’d realised my dream?
Last year, many of you will know, I was finally diagnosed with fibromyalgia. This is a chronic pain and fatigue disorder that I will need to manage for the rest of my life. Good news, a key part of management is exercise! Bad news, “grading” and “pacing” are not words I’m used to when it comes to running! Connected, or unrelated I’ve also had a lot of other medical problems recently that have put spanners in the works BUT… I have had to learn…

Grading – This involves starting at a very low manageable level of exercise, i.e. 5 minutes of walking per day for a week or 2 (depending on residual fitness). The idea is then to build up very slowly, 1-2 minutes at a time and this is then maintained for a period of time. Gradually other exercises can be added in (of particular value in fibro are things like warm water swimming or yoga).
Pacing – Pacing involves doing the same amount of activity each day, no matter how you’re feeling. The hard bit for me is that when I’m feeling good I want to run and run, which (with fibro) means I’ll pay the price within hours. Even just running a bit further than planned, my joints and muscles ache and the fatigue feel unmanageable. On bad days it’s easy to feel that exercise just isn’t possible but studies have shown that even though symptoms may increase, if appropriate limits are set, it is possible to repeat the performance from the previous day.

I am not someone to give up without a massive fight!
I was referred to a specialist clinic and I went with my long list of questions… at the top? “Will I ever be able to run a marathon?” To be honest, the physiotherapist was not forthcoming with a promising answer but she could see I was enthusiastic, wasn’t going to give up without a fight and she didn’t want to put a dampener on things so she suggested 2 years may be a time scale I could work to.
So, with grading and pacing in mind, October 2018 in my goal.

In Novemeber 2016 my GP referred me to the gym. I started walking for 5 minutes on the treadmill and using the cross trainer and resistance machines to improve my fitness without putting strain on my joints. It was really hard making all the effort to go to the gym just for 10-15 minutes exercise but I had to keep my eyes on the goal. Gradually I added in 2 minutes jogging, increasing it bit by bit, listening to my body and working within my limits. Each increase, my instincts would say “push yourself”, I then have to be strict with myself and make the increase smaller than I wanted – literally 1 minute or 0.2km/h at a time. It’s been really hard.
Pacing has been a tricky one, I’ve hit and broken through “the wall” many times as a relatively fit and healthy individual. I have fallen into the trap of thinking that was all I needed to do with fibro. Unfortunately, after the wall, there’s a 20 inch thick concrete block, then a steep mountain crag, if you do manage to push yourself through all those, there is then a crevasse… So, even when I’ve wanted to do more, if my plan says to repeat the previous day, that is what I do.

So, working carefully, the treadmill and cross trainer have got me to the point of being able to jog for 30 mins. I registered with Parkrun, a free weekly 5k run organised across the world.

Joining the 500 other runners I felt that excitement/nervousness I’d experienced previously at much bigger races and it felt good! I promised my husband I would “plod” round. I was drawn along with the crowd but I was determined not to be driven by striving for a PB or specific time. I must admit when I received my time by email I was quite excited… That is not the point, the point is, I did it, I jogged/ran the whole thing and I really enjoyed it! Yes I ached afterwards but that’s not the end of the world, I did all my usual warming up and cooling down and I can safely say I have not felt any unmanageable adverse affects!
Fibro aside, I’m really hoping none of my other health problems get in the way! My next goals will involve running further but increasing it very slowly. I’ll keep you posted.
I’d love to hear if anyone else has set themselves any goal or challenge, fighting against the odds!
 

Should I be glad my illness is invisible?

I have read a lot of blogs and articles with people outraged that people have no understanding about invisible illnesses. As a mental health blogger it’s easy for me to climb on the bandwagon but as usual I like to ponder things from a different angle. Mental illness by no means has the monopoly, most cancers, diabetes and most illnesses involving internal organs are on the list of invisible illness.
how-we-feel
Someone came to me the other day and told me about being jeered at in the street. He was confused about why but it made him angry and upset. The gentleman in question has a learning disability and the likelihood is that the way he was standing/walking/looking may have looked out of place/unusual, he is unaware that he looks different. Why would someone jeer at someone with an obvious disability? It’s plain cruel. It made me stop and think about how I feel about my illnesses being completely hidden.
I smile as I recall the number of times, while seriously unwell, even sectioned, in hospital, I was mistaken for a nurse on the ward. Most of the time, from my general behaviour and demeanour, no-one would have been able to tell the torture going on inside my head. No matter how unwell I’ve been I’ve always washed and dressed and tried to face the day.
chronic-illness
Sometimes mental illness is more apparent, for example if someone is unkempt, looking withdrawn or responding to stimuli other people cannot perceive. But most of the time mental illness is relatively hidden if not invisible.
Is this a good thing or a bad thing?
When I despair about having a hidden illness, am I seriously suggesting it’s better or easier when the illness or disability is on show? I have wept when I’ve watched documentaries about people with facial disfigurements, the stigma, the shame they feel and the impact this has on them day to day as they fear people staring, pointing and making judgements is totally undeserving. Katie Piper is a stunning example of someone who talks openly about what it’s like. I cannot begin to imagine how people manage a condition people can see.
Perhaps this is a blog about judgements people make.
judging-a-person
Why, whether obvious or hidden do people make assumptions and judgements about other people’s abilities and disabilities?
Why should I be afraid to park in the disabled bay? If I have a blue badge it’s because I need to park closer to the building, should it matter to other people why? The wheelchair is the universal sign for disability, it does not mean I have to be  in a wheelchair to use the space. People with conditions from autism to fibromyalgia, from COPD to paraplegia need to use disabled parking. Why is it anyone else’s business? If I have claimed a blue badge fraudulently, this is a matter between me and the authorities, not Joe Blogs Public.
if-you-could-see
On the flip side, just because someone has a visible illness, disability or condition, it seems that people make judgements about what they can and can’t do. For example, the gentleman I wrote about earlier (with the learning disability), we are working very hard with him to become more independent, which he is managing very well and it’s building his self esteem. But the people in our local shop assume he cannot do this and therefore insist on him giving them his shopping list so they pick items for him, it is well meaning but completely unnecessary and making him think he can’t do it!
The benefit of an invisible illness is that you can choose to keep it hidden, no-one else has to know unless you wish to tell them. The down side is, if people assume I’m ok, I do not get the help and support I need.
The stigma and discrimination experienced by someone with an invisible illness is due to lack of understanding and awareness that the illness exists, the assumption is, if you look normal, surely you should just get on with life?
The stigma and discrimination experienced by someone with an obvious illness is due to people making inaccurate judgements about something they think they understand but the reality is they do not understand at all.
Why do we place so much importance on appearance? We need to stop judging a book by its cover. Just because I look “normal” don’t assume I can just get on with life; if I look different, don’t assume I’m not capable.
be-curious