Tag Archives: chronic illness

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.

 

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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.

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.