This week the cheating began on Tuesday and there has been something every day. I’ve managed to stay dairy free and meat free but everything else has been broken in some way shape or form. And on Sunday I am suffering for it. I am sore, have a migraine from hell and my eyes are stinging.
It began after a difficult bike ride. I managed the four miles in to town. But then I had a Fanta. I needed something cold, wet and fizzy and full of sugar. In hindsight I should have packed a banana. Later in the evening I had a beer.
Then at my mothers I had forgotten to take my oatcakes so whilst I stuck to the rest of the diet I had Crackerbreads and allowed myself a glass of wine.
It really has just gone downhill. There’s been one thing after another and you know what aside from the glass of wine none of it has been worth the pain.
I’ve learned a lot and hopefully I won’t make the same dumb mistakes again. Because I’d forgotten how much things could hurt.
Today has been good – I’ve had my smoothie, a bowl of soup, loads of water and bean casserole for dinner. I won’t be having anything else.
Things are still going well on the leaky gut diet. I’ve got more energy and I’ve also managed to shift some weight for the first time in ages.
At the start of this I decided not to weigh myself so I don’t know how much I’ve lost. I do know my PJ trousers fell down this morning and all my clothes are fitting better so I left the house with a swing to my hips today.
Despite many temptations I’ve stuck to the basics with a treat day on Tuesday where I go to the chippy for Egg, chips and a bottle of Lilt (Totally Tropical Man) and then head to the Co-Op for a dark chocolate and marzipan bar. Even then it can take me two weeks to eat the chocolate bar.
Health wise I am doing much better going to bed before midnight most nights and actually sleeping right through until morning. Getting up at 8am-9am is easier every day. Fatigue is still there but the energy is increasing every day. I'm also able to function in the evening, helping to get the kids to bed at night.
Pain is a different issue. I have other issues these days that confuse it like pain in my hands and pain in my hips caused by having children. Also with me doing more my muscles are rebuilding after a long period of inactivity and I know from past experience that that is incredibly painful. However the way I am moving suggests the pain is reducing.
I’ve made some minor changes:
Breakfast smoothie: blueberries, bananas, coconut milk, almond butter, rolled oats and tofu/pea protein. I’ve started adding tumeric and cinnamon to the smoothie. After drinking it every morning I feel massively energised.
Snack: nuts and ginger tea.
Lunch: Vegetable soup at present I’m still keeping the butternut squash this week but I am not sure it’s doing as much as the blueberries at breakfast. However, I may have an allergy to courgettes which have been plentiful in my veg box so have been in every soup recently. With the soup I’m eating pickles and oatcakes with a protein heavy spread (hummus, nut butter, lentil pate etc) After a lot of trial and error with the sauerkraut I’m quite liking it with cider vinegar, hummus and green lentils on oatcakes.
Snack: a pear and a ginger tea.
Dinner: This is more varied. This week I’ve had Tofu kebabs with rice; chilli beans and rice; tofu steaks, homemade oven chips and oven baked butternut squash; a curry and rice to use up the chard (the one vegetable I don’t really like); lasagne made with TVP mince, vegan cheese sauce and courgette lasagne sheets; pasta bake with vegan cheese sauce and gluten free pasta and a vegan cottage pie using the TVP mince. For an occasional dessert I’ve been having fruit and coconut yoghurt, raspberries or a baked banana with nut butter and coconut cream
Supper: This has been a big change. I’ve been making yellow milk with tumeric, coconut sugar, soya spread and coconut milk. I expected it to be yucky but it’s actually quite pleasant. I’m finding I’m not needing the banana and oatcakes as well.
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Today I am tired and sore but I’ve been doing more than I have in weeks.
Really proud of myself as I have watched people eat cheese, meatball marinara Subway sandwiches and scones with strawberries. Not once have I been tempted to cheat and I’ve stuck to my diet.
Every breakfast I’ve been having my smoothie: blueberries, pea protein, almond butter, oats, banana and coconut milk.
Snack: Almonds or mixed nuts but no peanuts.
Lunch: Veggie Soup with oatcakes and protein (hummus, almond butter, vegan soft cheese) and the dreaded sauerkraut – I do need to make my own as the shop bought one has the emphasis on the sour rather than the kraut.
Snack: A pear or carrot sticks and hummus, and a cup of herbal tea.
Dinner: That has a bit more variety. I even made a rather lovely lasagne with vegan cheese sauce and courgettes instead of pasta. There’s been chilli beans, bean hotpot with rice, last night we were at the beach so I made a hobo dinner (veggies and chickpeas covered in harissa paste). If I’m hungry afterwards I’m having another banana. I must be eating about twenty bananas a week.
Supper: Banana, almond butter on oatcakes and a cammomile tea.
I’ve not been hungry at all because I’m probably eating more than I usually do.
Yesterday I went to the beach and had a proper swim in the sea (which may explain tired and aching). Its the first time I’ve swum in the sea for a very long time and I’d forgotten how good it can feel.
I know... I know it was the 8th August but I have Fibromyalgia and as great as I am feeling I have my limitations.
For some ME and Fibromyalgia is terminal. In someways a condition without hope or end is worse. At some point in 1998 my hope left me and realising I was not going to die was a horrifying thought. Some things in life are worse than death. Severe ME is one of them. Yet there is less money poured into it than cancer. Had I been diagnosed with cancer in 1997 there is a much better chance I would have had answers, understanding and a resolution by now. Instead I am sitting in the park weighing up if I have the energy to play with the kids.
Many say "We've never met anyone that badly affected by it" but you wouldn't because they don't have the energy to deal with you. Even a doctor is most likely to see a severe ME patient on a good day because that is when they can get out of the house.
Tonight someone asked me how Fibromyalgia pain compared to being in labour with my children. There's no comparison the labour pains even towards the end and having been induced twice were well within the normal range for Fibromyalgia and they didn't last as long. I've known people with the condition not notice they have broken bones because the pain is within the normal range. My worst nights have been when I've been in too much pain to sit, stand or lie down but I'm too exhausted to be awake., Fibromyalgia chest wall pain is by far the most excruciating thing I have ever encountered.
Is it all in me head? Well there are observable symptoms: my body gets rashes and massive hives, I swell badly and my feet get red, hot and sore. In the modern age I can take pictures of the things that happen to me so that sod's law doesn't occur before I get in to see the doctor.
For me the leaky gut diet has been my first real ray of hope in over twenty years. However, it may be another disappointment.
Here is are some articles that I found worth reading:
Body Count - The Tragic stories of Severe ME
The Telegraph - What It's Like to Live with Severe ME
I wrote this short story myself based on the time just after my diagnosis. Suicide is a valid option when there is no hope.
Wynter, Fibromyalgia Story
After forty eight hours of behaving myself with food I am pain free and full of energy. I’m a sceptic but this is the fourth time I’ve started this diet or one similar and the pain has vanished. This time I’m more hopeful and determined.
In fact I am so determined that I took my children to Subway for lunch and I drank a bottle of water whilst they ate. When it comes to a Subway meatball and cheese sandwich I have no willpower but today I watched my son eat one and didn’t even feel tempted.
For breakfast I’ve been making a smoothie of blueberries, bananas, rolled oats, pea protein and almond butter.
For lunch I’ve had vegetable soup. I’ve made sure it’s had butternut squash in every day but I’ve included other veggies from the vegetable box. Butternut squash and broad bean with a dash of liquid smoke was particularly yummy – it tasted like pea and ham.
Dinners have been Tofu steak, rice, cauliflower and mushroom sauce. Tonight I made another tofu steak with new potato crisps (homemade) and a salad (courgette, carrot, cabbage and white wine vinegar). Tomorrow I’m attempting a vegan, gluten free lasagne.
Today I got up without any struggle at 8am. I took the children to see Finding Dory at the cinema and came home and cooked dinner. Usually I’m thinking lets order pizza after a full day out. My daughter had hers in her room (first day out after having her cast off and she was knackered) and I managed to run up and down stairs three or four times.
My son’s bedtime was a treat rather than a chore I dread because I’m so sore by the evening.
I’ve managed to clean the fridge out but as yet haven’t started the kefir and the sauerkraut. I’m hoping to do so over the next couple of days.
Next June will be the 20th Anniversary of my diagnosis of Fibromyalgia and my fortunes over the years have varied. During that time I’ve been forced to find the path that works best for me.
In 2014 I made a promise to myself that I would find a way to kick this damn illnesses tail rather than have it kick mine. I started off doing all the things I thought worked and in doing so worked out a few that didn’t. But I am much better than I ever remember being in my life to the point that when I go down it’s so much more difficult to deal with than it used to be.
Diet has always been key to my fatigue. Certain foodstuffs like pork and beef make it horrendous. I love food and working through various diets to find what works. Following a TV interview by Martin Shaw I went vegan (with a few relapses). Why I don’t know it was a gut thing, but it was the beginning of a new life for me.
Overnight my painful mouth, hives and my IBS disappeared. My fatigue has been more manageable and the pain is gratefully reduced.
Earlier this year I had a few months of feeling fantastic. It was a remission like I’d never had before. I listened to a web broadcast about leaky gut recently. Now as a long standing Fibromyalgia sufferer I am a skeptic. Over the years I’ve spent a lot of money trying to feel just a little better. There was no way I was signing up to anything but I was surprised to have him reel off several things I was doing when I was feeling great:
I was eating a lot of sauerkraut and pickles; I had a glut of blueberries in the freezer so ate a lot of them and there were loads of butternut squash and sweet potato in my veggie box. (Provided by the lovely people at Scotgro)
So from tomorrow I’m going to get the kitchen sorted:
We’ll see what happens. I’ll try to take pictures of the food this week as Banana-Bug is out of her cast and I feel more inclined to force her to help me.
I haven't changed my religious beliefs but this interview changed my mindset and life in a lot of ways. Why I still don't know - I was doing research for a book.
I have Fibromyalgia and this week it has been kicking my tail more than it has done since I started my vegan diet. It brought to mind a story I had written about the time just after my diagnosis.
One of Mayhem's biggest champions was a wonderful author and reviewer who had Fibromyalgia. She was determined that the story wouldn't settle for any old publisher ;) Sadly, she died in 2013.
**********TRIGGER WARNINGS (CONTAINS SPOILER) *************
This story is bloody miserable and it is about euthanasia
Fibromyalgia was the White Witch who waved her wand and turned lives to constant winter. Aslan could come and make it spring again but there was no telling when or if that would ever happen.
The Wallace and Grommit alarm clock on the bedside table told her it was one. Afternoon probably. It was awful dark for day though. It could be one in the morning. Apparently, the date was 09 06 98. An anniversary of sorts. Her life had ended three years ago, exactly, or maybe exactly but twelve hours ago.
Snow fell, thickly, outside her bedroom window. She watched it and felt nothing. Feelings required energy from her that she didn't have to give. Even with the curtains open it was dark and grey; it sucked the colour and the vibrancy out of the tiny room.
Fibromyalgia. She'd never heard of it before that day. Take these tablets and follow the instructions in the leaflet. They had said. You should return to something approaching a normal life. They had said. Don't worry it's not a life threatening condition. They had said. They being the medical profession. The same people that couldn't tell her why she had gone from swimming, dancing, playing rugby and working a physical job to staring at the ceiling drooling. Dribbling was nice; it created a sensation on her chin and it was one of the few things her body could still do. I'm not going to die! I'm not going to die! I'm not going to die! She wasn't sure at which point the jubilation of those words turned into dread. Dread that she would have to face the next day.
Lazy, self indulgent, mental were all names those who should care had called her. Her last visit to A&E had seen humiliation at the hands of a sadistic bitch of a doctor. She wished she had the energy to be lazy or self indulgent. The brain power to be mental was a dream she had. Maybe they were right. There were many days when it felt like she was watching someone else's life. She'd stopped living.
Children played outside the flats, throwing snowballs at each other. They built a massive snowman in the car park. The obnoxious man from across the road stopped his car and yelled at them because he couldn't drive into his spot. They swore back at him and refused to move.
She watched them and wanted to smile but she couldn’t manage the energy to feel the emotion to drive it. Caring about another required her to find some vitality that she couldn't afford to share.
Stuck three floors up she hadn't made it downstairs to the living room in a month. Outside would be a mission to boldly go where she had never been before – well it felt like it anyway. She tried to open the window, desperate to for the cold and to breathe the fresh air, but she couldn't. Her hand was too stiff to grasp the handle.
There was no response.
She remembered. Her mother had gone to the shops with her brother. Tears would be a release but she didn't have the energy. She lay back on her bed and stared at the mushy pea green ceiling. Her sensitivities meant that she couldn't change the colours of the room; she'd chosen the dolphin wallpaper when she was sixteen. At twenty-four it seemed childish and the hues evoked a cell in Wormwood Scrubs; some cells in prison had to be bigger and prisoners got an hours exercise. She knew each speckle on the ceiling personally. One night she'd named them. Seventy-two hours of pain: too sore to stand, too sore to sit and too sore to lie down. She had considered getting her brother to stick naked men up there but her mother wouldn't have liked it.
“We're home. You OK up there?” The front door closed. And she heard the rustle of plastic bags in the kitchen. She couldn't remember the last time she'd been to a supermarket. ASDA or Tesco – which one had they gone to?
“Yeah, Mum.” She wasn't OK. She had not been OK for three years. The novelty had worn off. Few people still remembered her, let alone cared whether or not she wasn't OK.
“Do you want anything?”
“World peace and perfect skin.” What she really wanted was to watch TV but she couldn't concentrate on anything and it bothered her eyes.
“Shout if you do want anything.” In an earlier life she studied for a degree and even considering a postgraduate course. On a good day, if she was lucky, she could read Thomas the Tank Engine or the Australian story about the Magic Pudding.
With bowed legs, she waddled to the bathroom. She didn't know why her knees wouldn't straighten up, her brain told them to but they wouldn't obey. All she needed was a pee. It was barely worth the trip down the landing. The walls in there were a cheerful pink. She sat on the toilet until she got together the energy for the walk back to bed. Pins and needles built in her feet until it was unbearable. She could feel the ring forming on her arse. The indentation would be something to feel later.
Attempts to move her feet failed. Damn! Life support only: when her body shut down all non essential functions. Her arms stopped and her head flopped. She had a choice – spend an hour waiting for the feeling to come back or....
That's right – total and utter humiliation.
Literally caught with her pants down. She wished. Sex was a distant memory and an activity she wished she'd participated more in when she could. Adrian had stuck by her until the drooling started and the bad temper has developed into a roaring fury.
Mum took her time. These days she seemed to be slowing down. In the early days, when she'd first come home everyone had leapt to see to her every need and comfort. Now they knew she wasn't dying the novelty had worn off.
“Oh, dear.” Her mother said. She could have been talking to a toddler who'd had an accident.
Damn! Bugger! Blast! And all other expletives. She wanted to use some stronger ones but not with her prim-and-proper mother around. Even in her head it felt wrong. Her Mum was even smaller than her at just barely 4ft11 and she'd aged recently. Hanging over Mum and having her pyjama trousers pulled up usually left them laughing but today her mother didn't even make an effort to smile.
“Tom! I need help.”
Crap! And now her brother was needed. Her mother and brother were laughing and joking, but whilst she heard the words she couldn’t process them into sentences. Her body remained stiff. They carried her back to bed. It always hurt her arms so much when they carried her like this. Laid flat on her bed she still wasn't moving.
“Try to sleep now.”
In other words one of my shows are on and I don't want disturbing.
Downstairs life went on without her. Her mum and brother cooked the dinner she didn't want. Lasagne and garlic bread it smelled like. It used to be one of her favourites. Her arms weren't moving and she'd need to be fed like a baby. Today, that would be a humiliation too far.
Outside children played, car doors slammed. Christmas was coming apparently. Like that changed anything. They'd be having fun and she wouldn't be able to join in. Her only contribution was needing cared for.
Oblivion in the form of sleep did arrive. At some point during the night her limbs broke free of their self imposed cocoon and the movement woke her up. The indentations from the toilet incident had gone.
She waddled to the window. The snow lay thick on the ground and the world glowed orange beneath the street lights.
Her brother snored in the next room.
Wallace and Grommit proclaimed one o'clock. Probably in the morning this time. Twelve hours had passed and the highlight had been getting stuck on the toilet.
She could not face another dawn.
Underneath her bed was the box. She'd planned this and it contained her note, financial details, will and the means to end her suffering: sleeping pills, painkillers and anti depressants. Since she’d been diagnosed she’d stockpiled all the tablets she’d been given that did nothing to make her life better. They ate her brain, made her itch and want to vomit.
This wasn't about dying. Her life had ended three years and twelve hours ago.
Her hand shook, but the thought of not dying and living like this for maybe another forty or fifty years drove her to take pill after pill. If God wouldn't answer her prayers and take her away then she had to do it herself.
Some said the pain was unreal that she just wanted attention, because every twenty-one year old on the brink of a fascinating new career throws it all away to lie in bed screaming in pain and drooling. Day after day. All she did was hold back those closest to her. Her head felt light and the road to freedom had begun. She'd read about the convulsions and losing control of her bowels, but it would be fleeting.
The brief note on her bedside table read:
To Mum and Tom
Heaven, hell or oblivion, no matter
for it will be bliss.
Taken from this Earthly shell to
a place away from pain
Don't fret about me.
I'm content to wait
until we meet again.
The Kimlin Family