Tag Archives: exhaustion

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.

 

 

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????

 

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).