Tag Archives: pain

For the first time in forever.

I am writing about this because otherwise I may forget it ever happened and then it won’t have existed. Yesterday, for more than a few fleeting moments, I felt like ‘me’ for the first time in nearly two whole years. It is a fucking miracle. Isnt the universe great? Last week I was falling into a pit of despair and hopelessness, I was contemplating that if this is as good as it gets, because the here and now in this  moment is all we can rely on, then how can we judge if it is good enough for us in the long term?

So for just a few moments, a few different ones, probably adding up to about 10 minutes all in all, I was ‘me’. I felt enthusiasm, I felt in control, I felt hopeful and happy as I used to. See the main photo – which was taken a couple of years ago before I got sick, before everything went wrong, before I forget how to feel like ‘me’. Now I am working to getting back to also looking like the old ‘me’, begone steroid bloat and acne, bring on the fresh veg and good old water. The weather is improving so the urge to hibernate is lifting, walking seems more appealing and the sun really helps with my pain, so in the now, today, right now, I see that there is hope, that things can get better, that being sick is not the death sentence is sometimes feels like and that feels amazing.

I wanted to let other spoonies out there know that things can get better, really, don’t give up. xxx

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.”

Tired of looking at myself, wishing I was someone else

The true cost of chronic invisible illness. And I’m not talking about the strain on the NHS or the economy due to lost days at work.

I’m talking about the personal cost. I read a piece recently about a woman who had had her  Disability Claim denied because her assessing Dr decided that, after viewing her pictures on social media “the person depicted in most of these posts appears to be a young woman who is engaged in life activities, awake, smiling and alert. They do not appear to depict an individual who looks chronically ill”. He saw literally a snapshot of her life, he didn’t see the other 23 hrs and 55 mins of her day, the effort required to look happy, force yourself out of the house, to endure the ever constant pain and exhaustion is impossible to impart. Every day is a struggle, every single day.

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Ahhh when I went blind for a few months

My relationships have suffered, with my friends as, after a day at work, all I am capable of doing is getting myself home, getting my child to bed before I am literally on the floor with pain and exhaustion. So no more socialising for me unless it is in very short time frames, I have had to cancel plans so often that I just don’t make them any more. With my partner, a lot of the time, merely having my hand held hurts, I think you can see where I am going with this. He is a loving and patient man but why should he sacrifice his needs because I am ill?.

I was off work sick for a substantial amount of time and while my employer was very understanding I do realise that being a team member down impacts on the business and my colleagues, the anxiety of staying at home is real, it isn’t an opportunity to put your feet up and relax. I was due to start my Phd in January of 2016 but had to defer due to my newly diagnosed illness and I commenced in September instead. Today I saw my Supervisor and after discussions had to acknowledge that I am going to have defer this semester too and start again in the September of this year as I cannot keep up with the work required. I cried about this and I am not really a crier.

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Lots of lovely meds

I am not the mother I was or want to be. It was Lulu’s birthday last Friday and I promised her a trip to McDonalds after I got home from work and hospital (I’m in the middle of a 8 week treatment course). By the time I got home I was so exhausted and in so much pain  that I was shaking and couldn’t think straight so I lied to her and told her that McDonalds had flooded – this has actually happened before when it rains- and that we would go the next day but Saturday came and I couldn’t use the last of my energy driving there as we had to drive to a friend’s house for Lulu’s dinner, I am constantly having to make choices based on my energy and pain levels which is acceptable but of course as a parent, and friend and partner, these choices impact on others.

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Can never find a vein

I had a brain procedure sone on New Years Bank holiday Monday but my veins are so bad they couldn’t get the cannula in, after a number of goes they managed it but by the afternoon the bruise was enormous and black, I couldn’t keep it disgusted so Lu saw it and was clearly concerned, it looked awful. Why should my child have to see these things? She is 6 years of age, she shouldn’t think her mum is sick. Last ear I had Erythema Nodosum all over my arms and legs, big painful red swellings, I couldn’t have Lu on my lap or hold onto my arm because it hurt so much. How frightening for her that must have been? Not being able to cuddle mummy when ever you want because you will hurt her?

As a side issue my vanity has suffered greatly. Months of being bed ridden and increasing doses of steroids have left me overweight, bloated – hello moon face !- and spotty, thanks for the steroid endured adult acne. Lulu announced the other day that my tummy was so big it looked like I had a baby in it but that she knew I didn’t and that I was just very big – I’ve had to coach her endlessly on not using the word ‘fat’ as it is hurtful to people. She also added that her dad’s girlfriend had a very small tummy because she wasn’t big – thanks Lu, I just has t0 smile through gritted teeth and agree.

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Back in bed

I can no longer walk very far, before slowing to a snails pace as it is very painful but I walk as much as I can, you know cause its healthy and all that. I spoke with my GP about applying for a disabled badge for parking so I could park closer to the station so the walk would be sorter and the amount of pain I would have to endure would be lessened but apparently I don’t fall within the criteria, the ability to walk more than 50 metres means no badge. I can walk more than 50 meters, in agony, and pain that is so exacerbated that it remains with me most of the day. I am one of those people that fall into a grey area. The fact that I go to wok every day appears to mean that there is nothing wrong with me, that I need no other support or assistance. I go to work, because I have to, not because I necesarily feel well enough to do so, I have responsibilities, a child, a mortgage and it’s just me and my daughter.  So essentially unless I am entirely bed ridden I am not eligible for any assistance. The fact that a day at work (see feature photo of me on train home) means that the other 12 hours of the day are  written off is irrelevant. Cleaning my house is a painful exhausting  and very time consuming event, so I am caught in a Catch 22. At the moment I feel like I am merely existing, functioning, getting though one minute, one hour, one day at a time. Doing the practical and necessary things as far as I can and then there is nothing left for ‘me’. My Phd was for me and now that has had to be shelved.

This post isn’t about self pity, I don’t feel sorry for myself, I feel upset and frustrated and tired and old and frightened. I never thought that at 42 I would feel this way. Never.

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Getting dressed & putting on make up took all my energy that day

So the long and the short of it is just because I look ok, just because I go to work everyday, just because I smile does not mean in any way that I am actually ok. Invisible illness is real, it affects 1000s of people, trust me when I say that I do not feel good. I am trying my best, my absolute best, I cannot explain how hard I am trying.

 

 

I just want you for my own, more than you could ever know

Oh my darling Lucia, we have just spent your 5th Christmas day together and it was a privilege. You were so excited about Santa’s visit that you barely slept on Christmas Eve, which of course means neither did I, thanks for that!

I was up until 1am wrapping your presents, listening out for your little footsteps in case you appeared in the living room and all the magic was lost. But you managed to stay in bed asleep until 3am so I filled your stocking and left it on the end of your bed and snuck off to my bed hoping for a good rest before the fun and games began on Christmas morning. But it was not to be and 3 am rolled around too quickly.

I haven’t been feeling very well at all these last few weeks which is why I have been a bit tireder than usual and walking bit slow that usual. I have been trying my best to keep it from you, I don’t want to tell you am sick again because I don’t want you to worry but I don’t want you to think that I don’t want to play with you. I am trapped in an impossible situation.

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After your Barbie Dream House was constructed yesterday, 3 hours – thanks to your dad for delivering it un built!! – you asked me to play but by that point I was literally on my knees with pain and exhaustion, lunch had been cooked and eaten and I fell asleep on the sofa, the pain in my legs woke me up and there you were with nanny, happily playing with your toys. “Play with me mummy” was the refrain of the day and I kept saying ‘ later darling, I have to cook lunch” ‘later daring, I’m a bit tired’ and you looked so crest fallen, you were so patient, I prayed for time to go faster so it would be time for you to go to bed and I could stop refusing you play time with me. I never want to wish away our time together but I didn’t know what to do, we put on our pyjamas and got into my super king bed and you watched youtube toy reviews while I cuddled you and I silently cried while you sat on my lap, it was the worst day of parenting I have ever had, I let you down, I wasn’t the parent you deserved, luckily I have a streaming cold so you thought I was just sniffling as usual.

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You are so precious and amazing and I couldn’t give you the thing you deserved and needed, my undivided time to do with me as you wished. That is the real price I pay for having a chronic illness. It’s not the lack of ability to have a social life, its not the frustration at the endless pain I cant control, its not the fear of a liver transplant, its the fact that I cannot be the mother you, my child, needs and deserves. I can never have that time with you back again and all you will remember about this year’s Christmas day is that I didn’t want to play with you. As the time passes I hope that is not the thing that stands out, let it be the big tacky dolls house with ALL the sound effects, please.

Lucia, I love you so very much, more than I can express, there is no one else I would like to send my time with. As you left with your father this morning to have Christmas with him, my heart broke and I wanted the time back again, I want to be well, I want to play Barbies with you.

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.

 

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.