Monthly Archives: May 2016

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????

 

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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.

Tiptoe through the tulips

Well, bluebells actually. Can you believe I have lived in Buckinghamshire for more than five years now and yesterday was the first time I’ve been to admire the bluebells? Shockingly remiss of me. Anyway, I got up, go dressed and dragged puppy out for a saunter through Wendover Woods, it was a beautiful day, made use of the cafe and bought coffee to energise me for walk. Unfortunately it started raining but the flowers were still breathtaking.

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That path just calls to you

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I feel rather proud, as if I climbed this! I didn’t I drove.

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Felt like Little Red Riding Hood following the woodland path

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Puppy and coffee, two of my travel essentials

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And breath in the beauty

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My most favourite colour ever

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What not to do with bluebells, look but don’t touch please!