Tag Archives: fibromyalgia

It’s better to feel pain, than nothing at all. (Or – What would you choose – excruciating pain or chronic exhaustion?)

Hmm, difficult on so many levels and the fact that it isn’t actually a ‘real’ choice, after all who would choose either? But, for me I would take the pain over the exhaustion since I have luxury of having both. The exhaustion is completely debilitating for me. It is “bone-crushingly, walking through treacle, dragging water up a hill, can’t remember my own name” awful. Don’t get me wrong the pain ain’t great either. It hurts when I move, it hurts when I’m still, the touch of my T shirt on my skin hurts, everything hurts, inside and out and I occasionally lose my vision because of it. “Well, get some painkillers” I hear you cry but really none of them work for me and all I’m left with now is morphine but I am already dopey enough with the tiredness thank you, and I have to be able to drive to get to work. Those pesky bills simply won’t pay them selves!

I am in the middle of what I believe is known as a ‘fibro flare’, an exacerbation of my symptoms that happens for no apparent reason what so ever but then again no one has any idea why people develop fibromyalgia in the first place.

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So, if I accept that things hurt and that is just life, how do I deal with the tiredness? It really does not matter how long I sleep for, I will still be tired, there is no ‘catching up’. I already take an array of vitamin and mineral supplements, including turmeric for the joint inflammation, magnesium for my insomnia and now I have added ginseng for energy. I eat well but the fly in the ointment is when I am tired, the time you should really eat all the best things, it is the time that I can barely wash my own hair let alone contemplate making anything to eat. My appetite wavers a bit and I then crave bad sugar and carbs blah blah blah.

I’ve made reference to the Spoon analogy before and at the moment it is so true. I have a limited amount of energy, spoons, each day. So I have to make choices, during my flares particularly, most days. If I walk up the stairs at work will I be able to have a shower when I get home? as walking up stairs uses one spoon as does having a shower. So I mitigate my circumstances as much as possible and no, exercising and pushing on through does not help, it makes it worse. I know that I felt particularly bad on Monday as on Friday I had a half day at work and I went shopping for two hours to buy my mum a birthday gift and have a nice wander by myself. I slept until 5pm the next day. Now, one can ‘borrow’ spoons to use from the following day but then the next day you have to manage with less spoons. More crappy choices. I think what I really need is a PA and a house keeper to look after me.You know, stroke my hair, tell me I’m pretty,  and that I shouldn’t worry as everything will work out just fine.

Over the last few months I have grown to be genuinely grateful for my mum and having her around me now rarely makes me grumpy (I am clearly much sicker than first imagined!!!), but wow the guilt I feel around my 6 year old daughter is over whelming. ‘Mummy, why don’t you ever want to play with my barbie dream house?’ err because mummy is using all her energy to stay upright at the moment! – only joking, I’d never tell her the truth but she is verging on thinking that I really don’t want to play with her so I have now taken to saying ‘you know how mummy sometimes gets a bit tired? well, I’m a bit tired now so we can do either do activity a) or activity b) but not both, which would you like? but if even giving options is exhausting, alternatively we can watch a film on the good old ipad instead which she loves and I can nap. But it is very obvious to me that I am not the same person I used to be. Having less energy also means one has less enthusiasm for things which is hard because I am usually one of those annoying smiley happy excited people, ‘Spring is coming hurrah’, I adore Christmas and start decorating in October. I am tenacious and passionate and interested in so many things, the world is an amazing place, but I feel a bit like a tortoise, crawling slowly through the day, no time for distraction, just concentrating on finding the energy to put one foot in front of the other.

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When I was in hospital recently I met a lady in her 70s, we were both waiting to collect our meds. She was an academic that had lectured in economics, still bright as a button and absolutely fascinating. She told me that she lived alone and relied on her friends to help her as she had had an accident a while back and had been house bound while she was on the long road to recovery. The thing she discovered was that in order to allow your body to heal physically you had to somehow turn off your brain, stop using all your energy thinking so much, no pondering life great questions in bed alone at two in the morning. She said of course it rendered her unable to have very interesting conversations with people but that it was a necessary part of recovery that simply had to be accepted. Just allow yourself to rest and to heal. She is right, she sparked something in me, it was almost a permission to allow myself to concentrate on healing my body without feeling like failure. I saw with great clarity that while my body was poorly I had been busy trying to prove that my brain still worked and I could have interesting  informed conversations and still had lots of jolly clever ideas to share. “See, see, I am more than my failing body”…..I see how desperate I may have seemed. Maybe instead of worrying that other people would judge my abilities now that I was poorly, I should stop judging myself. I’m still me, just a hazier version of me and one that needs to lie down more often than I used to but, as my Irish mammy would say “sure, it could be worse.”

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We’re not broken just bent

So, I got my fibromyalgia diagnosis earlier this year when things were just awful health wise and it has been with me ever since. I have done a lot of research, spoken to lots of doctors, sought advice from social media and this is what I have learnt;

Fibromyalgia is a disease that affects the central nervous system.

There is no cure.

The main symptoms that I personally experience are exhasution, chronic pain, joint swelling, insomnia and brain fog.

The pain never goes away.

Powering on through the tiredness is not the thing to do.

If I rest for a few hours in between tasks I can get things done.

I have a full time job and cannot rest between tasks.

I have a small child   – see above about rest.

I am a single mum – see above about rest.

I am doing a phd – see above about rest.

I rarely get very much done.

Orange juice makes the swelling and pain worse.

Refined sugar makes me hurt and bloats me up.

Aromatherapy oils in my vaporiser and massaged onto my painful bits really helps.

Dry heat helps (another holiday to Grenada for health purposes?……).

I am allergic to lots of pain meds.

I feel very guitly abut not being able to do simple things.

I feel like a failure as a mother and as a friend and as a girlfriend.

I have to cancel plans at the last minute because I just cant manage to do them.

I have stopped making plans.

 

My week in pictures

Monday

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My mum got a teeny tiny puppy – a blue chihuahua called Finn.

Tuesday

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I was taken for dinner at Le Manor aux Quat’Saisons. It was all types of amazing.

Wednesday

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As I knew i would be tired after last nights dinner I sensibly booked a days leave from work so I could rest. Pathetic, huh? That’s Fibromyalgia for you, your life is not your own.

Thursday

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Baby Lulu went on holiday to France with her dad and drew this delightful picture of her and I with Livia the sausage dog. Hmmm.

Friday

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At work, a hot sweaty mess.

Saturday

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I puppy sat my mum’s Chihuahua, they are actually playing in this photo. They  played and played and played.

Sunday

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Made Lorraine Pascale’s Gingerbread pancakes for breakfast. We have them every Sunday but I usually omit the spices and add vanilla essence as the children prefer it but as we were child free we had the proper grown up version with squirty cream and maple syrup.

 

 

Sunday, Sunday

NB I wrote this over a week ago but was too tired to post it – quelle surprise!!! Here its is anyway.

So, I made it through my first week back at work unscathed – well it was fours days really. Work itself was fine but on Thursday lunchtime I got the phone call from the school every parent dreads ‘your child had fallen off the climbing frame and banged her head’. These things are sent to test us, so my mum was dispatched to collect her and I jumped on train from London and met them at home. Lucia had a nice big bruise but after the ‘can you tell your name? do you remember the accident? Can you count to 10?’ she was deemed ok and so spent the rest of the afternoon watching the Ipad and eating ice cream. Phew.

I was so exhausted by then that I went to bed at 5pm, woke up to eat dinner in bed and then fell asleep agin, I woke for work at 6.30am and felt like I could sleep for the rest of the day. Getting up was hard, really hard, the exhaustion and the constant pain in my wrist, hands, arm and neck are tiring in them selves. But I did it and that’s the important bit. It made we worry though, I had been back at work effectively for 2 1/2 days and I was a physical wreck, this is not boding well.

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However, when I got home on Friday my Tens machine had arrived, all that hope I was placing on a tiny little item, surely I was heading for a fall? but no, I love it, it is amazing, I’m still taking the pain killers but the machine is so effective on my hand and wrist that I am quite amazed. How could something so cheap be so effective? I don’t know and I don’t care, all I know is that it is and I love it. People will stare, but that is not the sort of thing that bothers me anymore, believe me it really used to and that was when I was fine and well! Age and illness frees you somewhat from those thoughts, for me anyway. The machine sends little electrical currents through the pads stuck on your body, it does feel odd, a bit tingly, and sometimes it can be uncomfortable so I turn the strength down but goodness is it effective, I cannot recommend it enough. I have the wonderful @curlyb56 to thank for pointing me in the direction of tens and to this particular machine, she is fast becoming my ‘go to’ gal for all things chronic pain related so massive thanks and kisses to her.

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I spent all of yesterday in bed resting, watching Netflix and just ‘being’, but feeling really really grumpy, in such a bad mood, just looking for something to screech about, my poor mum she gets the brunt of it. She stayed to look after Lu for me and brought me dinner in bed again, she is lovely and kind but does drive me mad.

Today its just Lu and me, so far we have watched endless Youtube videos of Lu’s choice, mainly involving disney princesses while the puppy continues to teeth and chew everything that isnt above waist height but the sun is shining, sort of and I must take them both out for a walk soon. A new week looms and the fear I have re exhaustion remains but I know I am doing everything I can to ward against it interfering in my work life but that in itself makes me worry, what if my best isn’t enough????

 

Ooh aah just a little bit, oooh aah a little bit more

Hello world, it has been ages since I last blogged and it hasn’t been due to lack of desire but merely because I couldn’t think of anything to write about that may be of interest to anyone, including myself. I’ve been off work poorly again with my latest diagnoses of fibromyalgia and am still waiting for my Pain Clinic referral so each of my days are a bit like groundhog ones. I am exceptionally tired, constantly. If I do nothing but rest all day I am beyond tired and could sleep for days, if I do ‘things’ then I am physically exhausted by 5pm and can barely speak. This is the most difficult illness to manage that I’ve had to date, in my mind anyway.

The generally accepted wisdom is that exercise creates energy so off to the gym I go for gentle exercise, I pace myself but the next two days are always a write off, this illness isn’t one of those that works that way and I find it incredibly frustrating. I feel like I am constantly having to think three days ahead all the time. If I go for a swim today will I be able to get up tomorrow to take Lucia to school? It goes against everything I am, I am a single mum, with a full time job, a puppy, about to commence a Phd, I am the one that does lots of stuff, and I enjoy that, I fit it in and I manage but Fibromyalgia is standing on the sidelines mocking me. If I am planning on driving anywhere I have to consider that I won’t be able to take my painkillers as I cant drive on them, so I have to calculate how long it will be until I can take them and then accept that I will be in a lot of pain for that time.

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I massage my hands and knees and elbows with frankincense aromatherapy oil before I go to sleep – its good for inflammation. I take turmeric and ginger tablets, as well as a B Complex (can help with mental health), primrose oil for ‘that’ time of the month and cod liver oil for healthy everything. I have fresh juice each day with fresh ginger, I have a smoothie with berries, soy milk, banana, nut butter, dates, a spoon of acai, and a spoon of maca for energy. I have overnight soaked oats with chia seeds and linseed for breakfast. I drink water – though I hate it. I am doing the things that I should, and these are things I like. My mum bought me up eating tofu and brown rice in a time when people who did that were thought of as cranks (anyone remember the restaurant Cranks? amazing baked potatoes rolled in oil and rosemary before baking). I take the puppy for walks in beautiful locations that feed my soul, I’m trying my absolute best to ignore my cravings of Cadburys Big Chocolate Buttons, but I am also being kind to myself,.I am lucky that I have positive people in my life, my daughter is always the light at the end of the tunnel, she is my joy personified.

But, isn’t there always a but, I am back to work tomorrow and I am frightened. My biggest fear has always been the inability to cope. In my mind if I can’t cope then that’s it, game over. Like a house of cards, it will all come tumbling down around me. And I am feeling guilty, all the time. Guilty that I am tired and don’t go to the gym everyday, guilty that I am tired and am not up with the lark chasing the day, guilty that I let Lucia eat her favourite meal of fishmongers and chips everyday because I don’t have the energy to try and make her eat something I have created for her, guilty that some times I am so tired that I don’t have the energy to argue with Lu and I let her skip her homework for a night, guilty that when Lu wakes up at 6am on a Saturday morning I give her the iPad to watch so I can get some more sleep, guilty that when her dad collects her every other weekend for her Saturday night stay that I am relieved that I will be able to go to bed and not have to cook or play or have a bath if I don’t want to, guilty that I bought plants at the school fete and they have been sat in their pots for days because I am too tired to weed the veg patch and plant them, guilty that I want to be bathed in my pjs (thats if i have actually got out of them) by 7pm and that I just can’t muster the energy to go on a ‘date night’ with my partner. I worry he’ll think ‘this isn’t what I signed up for, what happened to the woman I met two years ago?’

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This illness is depleting me, the ‘me’ of old is fading, I’m not a good mum, friend or partner anymore, I don’t have the energy and to ask other people to live with that is extremely selfish of me, it makes it seem like the ‘Miriam’ show, and that’s not what I want. It isn’t the ‘me’ I want to be, it isn’t the ‘me’ I was  months ago but I fear it will be the ‘me’ from now on. I have become defined by my illness, restricted and curtailed. None of my other illness have ever done this to me, though they are medically more serious, but whats a liver transplant between friends.

But I must tell you a secret, something I quite dislike myself for feeling, something I am really unhappy about and that is how much weight I have put on. I hate that it bothers me, I hate that I cant seem to lose it, it makes me feel like I have no self control, why can’t I make myself exercise everyday? why can’t I curb my appetite? why does my weight bother me? It is so superficial but when I see myself in the mirror, which I avoid like the plague, I think ‘oh god, you look bloody awful’. If I was talking to a  friend I would say ‘FFS get a grip, you are dealing with so many things, the steroids increased your appetite, you suffered  a bout of depression, you are suffering from chronic fatigue, shut the fuck up abut your weight, you are a strong woman, a mum to a wonderful daughter’ but for the first time ever in my 42 years I am thinking ‘If I was thinner I would be happier’ I mean, what the hell??? Anyway thats my shameful secret, I feel like a failure.

Apart from all of that I’m ticking along quite nicely, you?

Ps the blog title refers to using up my energy a little bit at a time, slightly convoluted but I’m feeling the Fibre fog at the mo.

I just don’t know what to do with myself

So, for the last few weeks I have been feeling worse than ever. I realise it seems like I have been sick for ages, and I have, but after a few months of tests it was decided I had Sarcoidosis and after four months off work I started relevant meds and went back to work. The first couple of weeks were fine, I felt energised after making sure I has enough rest, good food, supplements, meditation and lots of water. Then, it all started to go down hill, I was really worried that the sarcoid was starting to get worse again so off to the doctor I went, she arranged an emergency appointment with my Rheumatologist, a few tests later and she talked through my symptoms, chronic pain, extreme fatigue, swollen joints, weight gain and she told me I had Fibromyalgia. I had already started crying at this point, I rarely cry, but the despair was starting to engulf me, I was sick and tired of feeling sick and tired and here was another bloody illness to manage. The list so far in order of diagnosis starting from when I was 20;

Osteporosis

Coeliacs Disease

Bursitits

Autoimmune Hepatitis

Hypothyroidism

Sjogrens Syndrome

Sarcoidosis

Fibromyalgia

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The last four have arrived over the last five months. I am usually so in control of my illnesses, a responsible patient, participatory in my treatment, a really honest and open dialogue with my doctors, I know my illnesses inside and out and they don’t frighten me. I listen to my body and take all in my stride, I’ve never been the type for hysteria.

The Sarcoidosis diagnosis was a relief as we had been considering cancer, Sjogrens is liveable with, dry eyes,mouth etc, the Hypothyroidism is a little more complicated but I am monitored and all is in is order but the Fibromyalgia – I’m not so keen.

The majority of my illnesses are chronic, and those ones are in remission, apart from the Fibromyalgia and from what I can lean it is a difficult one to manage. There are no medications or cures, I have been referred to the Pain Clinic to discuss subtitle medication to enable me to function, but as is always the case nothing is that straightforward. I am allergic to some of the main types of pain meds, the one that don’t really interfere with everyday life, so they are off the menu. Now I shall have to wait and see what they can suggest. I have been signed off work for two more weeks as some of my meds have been adjusted to compensate for the Fibromyalgia and the pain and exhaustion is overwhelming.

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I cannot imagine living like this for the rest of my life and I am panicking like mad, I’m not used to feeling so out of control, usually I just knuckle down, learn all I can about my illness, my body lets me know what I need to and I get on with it. This time its not that simple, nothing I do makes me feel better or more able to cope, I can’t sleep as my mind is swirling, being inside doesn’t help, being outside doesn’t help, reading about it doesn’t help, being with people doesn’t help, being alone doest help, reading, radio, tv doesn’t help,the meds don’t help, and I am worried about the future. What if I become too sick to work, I am a single parent, how can I pay the mortgage? I’m meant to start my Phd in September having deferred it from the beginning of the year due to the Sarcoidosis, what If I’m too sick to start it? My daughter is five, I don’t want her to think of me as ‘sick’ or having the mummy that always needs a ‘rest’. My mum was a single parent and she was sick a lot when I was little and I remember how frightening that was for me. I am becoming depressed, I know that, I can feel it, but I cant seem how to crawl out of the deep well I am falling down, time is running out, I can’t afford to spend what little energy I have trying.

Is this it? The pain may be manageable but the exhaustion? It is crippling and completely uncontrollble. On social media those suffering with chronic illness use #spoonie to identify relevant tweets, this is based onthis article written by Christine Miserandino,  I highly recommend you read it, it is the best explanation I have ever come across (and it uses spoons to explain everything – brilliant).