Tuesday, 12 May 2015

Body, Why Do You Hate Me?

So I had a bit of a frustrating and sad yesterday, that involved a few tears, several times! I thought it might be cathartic to write it in a blog post and last week having updated my pages (About Me, FAQ, Disclaimer Policy)...after realising they were years out of date, I said I sometimes touched upon life with a chronic illness, so have held myself true to my word! Actually for the most part, I try not to talk about it-I guess I don't want to dwell on it and my blog is a sanctuary away from that, but sometimes in order to explain a blog-break, I've had to acknowledge things in my personal life are more complicated than I admit.  So seeing as I'd been so busy with all that other stuff last week, I decided this week I was going to be ultra organised and really get into the blogging backlog that's been piling up. That was the plan anyway and by now I should know not to do that! living with ME chronic fatigue

If you're expecting some big dramatic reveal coming next, I'll warn you now, it's quite the opposite and more silly than anything, but hopefully gives some insight into ME/CFS. It actually began kinda humorously, when I noticed a huge plastic bag fly by the window. It was massive, so I caught sight of it pirouetting, out of the corner of my eye. I hadn't realised it was so blustery outside, but we have a high school nearby and school kids pass by our house to go to the supermarket for lunch, so I figured it was one of their bags. Then I saw it again and noticed it had a packet stuck to it with pink writing on it which I thought looked like the sleeve of a magazine my sister bought last week. This was followed by a spotty bag I immediately recognised as Topshop packaging, then black packaging from shoes I had delivered on Saturday. It was bin day (you know what's coming), so in a slight panic, I looked out the front window, only to witness all of our plastic rubbish flying and swirling at speed down the centre of the road. Insert four letter swear words here! I rushed through to the conservatory at the back of the house, hoping not to discover what I thought had happened, but right enough there were three bins outside and ours (in the freaking centre I hasten to add) had tipped onto the road, lid falling open, spewing contents everywhere. I could literally hear the sound of plastic rolling all around! I was home alone (parents on holiday and sister at work), so knew I had to deal with it myself.

No big deal for a 'normal' person right? It's the plastic bin so isn't overly heavy, but for someone with a chronic illness that leaves the house on average once a month, is almost completely unable to walk and has very little strength, this is HUGE!  I'm in no way anxious about going outside if you're wondering, it's purely physical reasons that prevent me.  The pelting of plastic swelled, so out I went, in my 'Despicable Me' pyjamas, down the path (which was built over a year ago and I've never even had the opportunity to walk on), out the gate, get strange glances from workmen at my neighbours (thanks for the help!) and onto the road. I haphazardly swing the bin up, shut the lid, then kick it into place as it gets stuck on the kerb. I was midway through, with my unicorn covered bottom in the air, when I felt a car pass, at speed, all too close. At this point though I'm almost beyond caring, because the embarrassment of the neighbours seeing my sleepwear or the fact they know what we've eaten all week, might just kill me first! After a frustrated grunt, willing the bin into it's position between the others, I begin to pick up the few remaining bits surrounding me. Mouthwash bottle, toner lid (no bottle) and yoghurt pots. I look up and see bags, purple Cadbury 'Pots Of Joy' tubs (seriously the yummiest things ever), Actimel bottles, a dozen Kinder egg shells and the bottle of toner all the way down the street. By this point the Topshop bag, magazine cover etc have made their way into various gardens and are blowing into the air, wondering which street to land in next. The junction in front of our house is covered (no exaggeration) with our litter. It's too far for me to walk to pick it all up (and blowing further all the time), so I go back into the house and collapse into the chair.

I'll admit I've never been good at describing my symptoms to others (and so in return get the tedious "oh so you're just tired all the time then" yarn), but it doesn't or shouldn't make the symptoms any less real. My body felt heavy and shaky, I suppose similar to how you'd feel if you'd just run a marathon. Then the tears came. I can't tell you how frustrated I get. We're talking about ten steps and a lift and kick of a bin, not a marathon. Not climbing a mountain. Not finishing an assault course. Ten steps and I'm shattered and in agony because of it. So, I just sat there, silently crying, trying to pull myself together, but everytime I thought about what had just happened, the tears flowed again. I couldn't move, I was too weak, all because of a silly bin. It was lunchtime, but I knew I couldn't make it to the kitchen, so I went hungry. Even if I could've phoned someone to come around and help, I couldn't make it to the door to unlock it. So two hours later I was still sitting there. See why it made me cry?

At midnight (when I went to bed), I remained sore and today I couldn't waken, so slept in, but am still tired and ache all over. With M.E., no amount of sleep or 'resting' will ever feel enough and energy can't be stored or 'saved up' for use at a later date.  Like I said, it's difficult to explain, but it's like your body hates you. Continually. You 'push' it, just the teensiest bit and it's like "hell no, ain't having none of this, I'll show you" and retaliates, rendering limbs useless or causing so much discomfort that you're in too much pain to put one foot in front of the other, hold your body up or lift your arms. You take care of it, you sleep well, eat well, rest and yet get nothing pleasant in return.  I've been going to physio for months (since the iron deficiency debacle last year), to strengthen muscles and progress, but it's never happened. On paper, it should work, I'm doing everything I should be doing, but my body just won't respond or cooperate.  I was told it would "hurt at first" but I'm never getting beyond that.  My body simply won't tolerate it. 

And so "I lifted a bin" becomes my "I carried a watermelon". I probably get to spend this week out of sorts, in pain, tired, aching and not achieving what I wanted to, because "I lifted a bin".  Slightly humiliating, severely disheartening and yet again disappointing. Had I been suffering for having fun, like going out for lunch or doing something hugely constructive like tidying my room, the pain and fatigue would be annoying, but almost worthwhile. For lifting a bin, it certainly isn't. Plus from previous experience I just know someone will have seen me out there on the street (a few seconds is all it takes) and surmise about how well I'm doing, "she looked alright when I saw her last week, she was walking without her stick, lifted a bin" and will spread it around, when they have no idea of the misery I'm in afterwards.  Many people ask, how I know I can't do something, if I haven't tried it, but instances like this, unceasingly prove how little my body is capable of. You're left wondering if this is punishment for previously exploiting your body, pushing it to the max all those years ago and if the two of you (you and your body) will ever agree you've paid the price, done the time, suffered to the point that it's becoming cruel and that you can compromise or form some sort of truce.  You're curious to know if you'll ever "get better" (mostly what the tears were about) and if you'll ever recapture the strength to have a 'life' again. It's been almost 13 years, so when do you say enough is enough and admit you can't do this anymore? Do you give in and give up? Nobody knows and nobody has answers.

22 comments :

  1. Oh lovely, I am so sorry that evil bin caused you such awful pain, frustrations and negative emotions. It really isn't fair. I hope to God, that you will be healed. I can that frustration that to other people will think you are well and fine when you are not.
    We can never perceive the truth and it is so unfair on the sufferer. That said, you DID write it in an amusing way, I really enjoyed your description of the dancing rubbish with a mind of its own, I'm just sorry you had to try and rescue it! X

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  2. What an honest and touching post... You really need to meet another blogger/vlogger I follow, she suffers in the same way as you (memyselfleanne) I will give you a mention to her on twitter xx

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  3. That's me!!!! Thanks Emma for sending me over here x x x x

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    1. No worries... Always good to find someone who can help support another :) xx

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  4. Kezzie pointed me over in this direction because I posted about my ME recontly too. I feel pretty conflicted about the whole thing. On one hand I feel so lucky that I'm only a mild sufferer and that I can actually still work (I did have a period when I couldn't so to have managed to get this far and back into work makes me proud.) But, on the other, I feel like a fraud because I look fine and do still manage to function "normally" for the most part. I definitely feel your pain though. I know it's no comfort for your physical symptoms but you definitely wrote about it in a much more humourous and elequant way than I ever could so big props for that!

    Big hugs
    Laura
    Lojo Vs The World

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    1. Thank you so much for taking the time to read this and comment. I bet you worry about relapsing though, do you? I think that will always be in the back of my mind, if I ever do get better, that I could easily be back where I started if I do too much. Pre iron deficiency last year, I was in quite a good routine, not at the point of working or being able to walk far, but a little walk each day and getting dressed up and wearing makeup etc. Unfortunately that's as good as it got over the 13 years, but this current stage is just horrendous and nobody knows what to do with me. Physio should be working but doesn't seem to be, so I know what I have to do, my body just isn't doing it. It's so frustrating.

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  5. I feel for you Gemma and am constantly hoping that you will get better :( I can't imagine what you must go through on a daily basis but posts like these help me understand. It must be so frustrating and I especially get how you mentioned that someone would see you out picking up the bin and be assuming that you are all okay and not seeing the effects. I feel like I can relate to you in a way: I had an accident and suffered from severe head trauma when I was eighteen and ever since I get really bad headaches, once in a while it's so bad I literally can't do anything except lay down in a dark place and suffer it out and hope it will be over the next day. Over the years it has actually gotten worse so that's not fun :( But my point is I look fine, you'd see me and think there's nothing the matter but on the days when the pain is at its worst, I'm completely controlled by it. Luckily most days I just have mild headaches and I've learned to function and once in a while there's even a day without a headache, which is all like "wow, this is what normal people feel like?!"

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    1. Thank you. Oh horrible. I get migraines and know how bad they feel and nothing seems to work on them either, no pills or anything. I find the same thing, people ask me how much pain I'm in, but I forget what it's like NOT to be in pain, so it's normal to me now and difficult to measure to explain to someone else.

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  6. Oh Gemma. I'm sorry that this happened, and I'm sorry that it seems as if there might not be a solution to it :( I don't really know what to say to help but want you to know I'm thinking of you. <3

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  7. Oh Gem, I'm welling up. My ME is nowhere near as bad as yours, but I know the frustrations of simple things that thwart me and how useless it makes me feel. It's so not fair, because you're such a lovely lady and you don't deserve this, none of us do. I wish I could wave a magic wand and make you all better, but I can't, so instead I'll say if you ever, ever, EVER need someone to talk to (and have the energy to email me) I'm always here for you. Now knowing how ME goes, I expect you're going to be too tired to reply for days, so I wish you lots and lots of rest. I know it won't make the fatigue any better, but sleeping longer means less hours awake to feel the sadness. Massive gentle hugs. xxx

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    1. Thank you Leah. I know, it's rotten anyone has to go through this. Such a frustrating and misunderstood illness (for 'outsiders') too x

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  8. you think hemp oil or some kind of medical hemp products can help even for bit?
    I'm thinking about that lately with my health issue...
    I may try cause it can be better than artificial medicament actually

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    1. I'll look into it. I've tried some alternative things in the past with no notable difference. I don't know much about hemp oil...it's omega in it, is it? I'm changing my diet this week, in a last ditch hope of helping, though yet again I've never noticed a difference before.

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    2. I don't know much either but,yes,it's omega in it.
      so,
      how's your diet working then?
      hope you've got good result.XO

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    3. Thank you for asking. The new diet came to a standstill when I spent the weekend being sick (the first week I was on it)!! I struggled to get back into eating afterwards, but I'm not being quite as strict as I was before, still eating a lot of fruit and less bread.

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  9. So sorry the bin event happened. I'm annoyed no one around bothered to help, really terrible manners. I can't imagine living with this is like, I have cerebral palsy in my legs and I know my legs get tired many days and sometimes rest doesn't help like it would someone else. I hope there will be something that can help you. Don't feel down for crying or being upset, it's understandable. I wish there was something I could do. If you ever need to talk or anything, feel free to pop me a message Xx

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    1. Thank you sweetheart, that's really kind x

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  10. This is kind of late, but I seriously empathise. I have chronic illnesses and also use a qheelchair, and Lupus is the one that just makes everything seem so much more work than it should be. IC shoes are one of the few ways I get to treat myself for having to struggle. <3 I hope that you can feel better for a while, and may your flares be mild and few.

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    1. Thank you. It's rotten isn't it? I'm sure "shoe therapy" works, it's kept me sane all these years!

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