Tag Archives: spoonie

And I wonder if you know How it really feels to be left outside alone

Duvet days

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Baby Lulu helping Mummy out with the guest list at Fabric

A friend of mine from Instagram recently posted the following quote ‘main caption above recently. She is a fellow spoonie, a fellow endurer of autoimmune disease and chronic pain and fatigue. Her post got me thinking a lot about how being so unwell really changes ones relationships in a way that can be really hard to deal with, from both sides. I spend my time either at work or at home, there are no other destinations for me these days. I am too tired, too sick, in too much pain. This is not how it used to be. I have spent half a life time working in clubs, I am a naturally sociable and curious person, I like being out and about, meeting people, talking, eating out. Having fun.

If I thought having baby might curtail these activities (it didn’t really, my ex husband and I just let Lu slot into our lifestyle, with a few less ‘out until at dawn’ scenarios) then it had nothing on that the impact developing fibromyalgia had on my life.

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Pimms in Nottinghill

I understand that at times friends don’t ask me to go places because they know I won’t be able to and I imagine that they don’t want to put pressure on me or make me feel bad when I decline. I cannot cope without rest, lots of rest, so that does put a stop to evening afterwork shenanigans. This has also meant that I don’t make plans anymore, ever because I have had to cancel at the last minute more often than not as my illness varies greatly day to day, I could be fine one day and then barely able to walk the next. I hate hate hate feeling like I have let people down so now I just don’t make any plans. I spend my evenig and weekends with my mum and my daughter. I know it probably isn’t hugely healthy, that I should be with friends, to let off steam, chat, be ‘me’ but we don’t always get to do what we want. I know I am doing my best.

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Lunch at the Oysterage in Orford, Suffolk

I’m not trying to do anyone a disservice, maybe the people who don’t ask me just don’t wat t see me, I can accept that! But for those who do like me, it is really important for me to still be asked to spend time with you, it makes me feel valued and wanted and all those things we are never meant to rely on other people for but we do. Each time a friend invites me to do something, knowing that I will probably say no or cancel at the last minute, it makes me feel really included which is so important when one has an illness that can be so debilitating and isolating.

So please, if you have a friend who is unwell, be it depression or any other illness, please remember, when they say no to an invitation, don’t be hurt, don’t vow to not bother again, it matters that you asked, it matters so so much.

 

And I know its gonna be A lovely day

Mornings are my nemesis, always have been. I am a night owl through and through, from writing uni essays at 1am, to all the years I spent working in the club industry and the long night shifts as a criminal defense solicitor attending police stations to see clients. I long to be up and at ’em at 5am, doing my sun salutations and journalling or whatever I would do with all the extra time, maybe taking over the world. Though of course I would be so exhausted by 12noon that I would need a lie down but that sort of stuff is frowned upon at my work place. My mum, on the other hand, literally wakes up singing, it irritates me beyond belief. The mornings are for the radio, coffee and NO talking.

I have read lots of blog posts about how to have a better morning, which in turn leads to a better day, and I have really tried to implement the things that I think would work for me and my lifestyle – single mum, chronic illness, commute to London, full time job.  I read a very amusing post recently titled how to get up when your alarm goes off and not hit the snooze button, I scrolled down and it literally said – alarm goes off, you get up, done! Made me laugh. None of this setting your alarm an hour earlier than necessary to facilitate the endless snooze button pressing. My uni friend Caroline reminded me recently that I used to have to put my alarm clock on the other side of my room as when it was next to my bed I had been known to turn it off in the fog of tiredness and go straight back to sleep missing my lectures.  So I have started just not pressing the snooze button, believe me I want to but compared to the anxiety of rushing around fearing being later for work, resisting the urge is worth it.

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I make sure my coffee machine is good to go the night before, fill it with water, clean the milk frother out, who wants to be scrabbling around washing up at 5.30am before your first cup of coffee? And that even if the kitchen is a bomb site then I have at least one cup available. I also make sure that any containers I need for lunch are clean. This next one is for those of us who take loads of meds, or who takes loads of supplements. Instead of popping out the 26 tablets I take each morning and risk making a mistake or missing some, I prepare a dosset box every Saturday morning that lasts 7 days. Basically I have two boxes, split into seven compartments and labelled Saturday to Friday and I fill each one with the days tablets so in the morning I just flip open the relevant day lid and into my mouth goes my pills.

I usually have a big glass of green juice first thing as food makes me feel nauseous. A green apple, 1/3 cucumber, small head broccoli, half thumb fresh ginger, half peeled lemon, half head fennel, 2 sticks celery. But I am lazy and have no intention of peeling, cutting etc first thing so I make up portioned bags of the veg three days at a time so I just grab a bag out of fridge, shove it into juicer and bang, breakfast.

I have also spent many a morning searching for my f***ing keys, as I fondly refer to them. So, as simple as it sounds, I now leave them in a bowl on my dining room bookcase, it is their home. As soon as I walk in the door there they go to rest until I need them in the morning.

See, nothing earth shattering, nothing new, but things that mean I don’t start my day in a right grump. So even if the rest of the day is not a super success, after all I can’t control everything, then at least I know my morning started as well as it could have.

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.”

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).