As some of you know, I take medication to control my neuralgia, chronic spinal pain, sciatica, restless legs and cramps at night and the feeling of glass shards running through my circulatory system (Gabapentin 300mg at night) as well as the worst thing ever, stress incontinence (Duloxetine 80mg). They are prescribed by my GP or orthopaedic consultant.
Everything was in a tentative, but working balance. I could function at varying levels and was mostly off all other painkillers (Tramadol 100mg in the morning). I have been taking this combination of drugs for at least two years with little, if any, side effects.
However, on Monday night, I went to bed at my usual time and took my Gabapentin capsule and Duloxetine capsule.
Twenty minutes later, I had extreme and sudden severe allergic reaction – anaphylaxis.
Probably the scariest moment of my life.
Anyway, more by luck than judgement, I managed to keep breathing, despite everything crashing down around me.
The next morning, now terrified, I phoned my GP to say what had occurred. “Stop the Gabapentin and Duloxetine immediately” was the answer. No tapering off gently, just stop. Cold turkey.
So this is my blog about my journey. Day by day. Both drugs are a big deal in their own right, with perhaps the Duloxetine being fairly major league.
Duloxetine is otherwise known as Cymbalta – https://en.wikipedia.org/wiki/Duloxetine
(please remember I was not being treated for depression. I am not depressed. Mad? Possibly! But not depressed.) The saddest thing is that Duloxetine worked well on the stress incontinence thing.
Gabapentin is otherwise known as Neurontin – https://en.wikipedia.org/wiki/Gabapentin
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Tuesday: no short term memory. I had a flute lesson and my lips were still puffy and my throat tight so I played badly. It was good to be diverted and I was, emotionally, feeling tough.
I researched on the ‘net how to detox from these drugs. There is lots of stuff about tapering down your dose but nothing about just stopping. People don’t.
The girls have been great. We have decided I will just eat healthily (no refined sugar and carbs) as that will let my body start trying to get rid of the rubbish and try to reestablish its own balance, ie no withdrawal symptoms.
I can’t decide if a little knowledge is dangerous (ie will I start imagining the potential symptoms?) or knowledge means you are ready to face it head-on not feeling scared of the unknown.
OH went shopping for tons of the “right” food. There was a gale so gentle exercise was out. The sheep and I went to the end of the track and, when we couldn’t actually keep walking, we had to give up and go home.
The night was long. I had a long Epsom salts bath, rested and then another shower. Then I started to sweat. There was no point being in bed so I watched rubbish telly.
Sleep: I finally slept for a few hours at 06:00. Continuous leg cramps all night that responded to nothing. I finally gave in and took a ibuprofen and that did help. Tonight, I will try rubbing Kwan Loong oil on my legs and see if that stops the endless cramp.
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Wednesday (7th Sept): This morning I woke up barely able to speak, let alone construct a sentence.
Daisy made me a fruity thing in the Nutribullet – frozen mixed berries, orange juice (with bits), fresh ginger and lemon juice. It was zingy and surprisingly woke me up so I went out to talk to Albie after his breakfast. He ignored me totally.
I had a sudden urge to burst into tears all morning.
I ummed and ahhh’ed about riding. I said I would go if I didn’t have to think or do anything so Daisy tacked up Haakon (and Iacs for herself). I got on and rode with my hands in my hoodie pocket. When we reached the canter track, Haakon’s right ear twitched, so I tickled his neck and he gently cantered up the track. That is our method of communication. I love it that Haakon is so easy, so simple, never complicated. He knows. Always knows.
Afterwards, I sat with Lambie and ‘Ster. I am hot and cold all the time. Sweating mostly but I keep drinking warm water with a slice of lemon, fresh ginger and lemongrass. It is nice and fresh and I have no desire to eat anything sugary, alcohol, refined. My favourite food is watermelon.
After lunch, I walked the park with Daisy looking for some lost horseshoes and then we went to be bitten by midges in the Minion field. I am not driving. All good gentle exercise. (please, oh please let me sleep tonight and please can I have no more leg cramp).
Oh yes, other things I love – Elizabeth Arden Eight Hour Miracle oil – I can’t bear the thought of claggy skin cream and after the Epsom Salts baths, it was perfect. Also, Clinique Moisture Surge Face spray. I went mad in Duty Free after my orthopaedic consultant told me the results from my last MRI!
Showers are good, though I just want clean water pouring off me and not much soap.
Floss has been brilliant. Cooking amazing cookies (Bake Off, but I am not interested), walking the dog and looking after little Albie (three meals a day).
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Last night was slightly better. I did masses of calf stretches, had a wonderful warm Nutribullet bedtime drink of hemp milk, banana and honey (lots of potassium) and tried to go to sleep. I will admit I took a valium as my head buzzed only upwards. I did sleep for 2 hours at a time, in between endless peeing. During the day I drink my hot water/lemon/lemongrass/ginger and pee a few times and then at night, off we go! It seems very unfair.
However, the cramps did return but were more manageable. Every time my left leg went into spasm, rather than lie there and wait, I hopped out of bed and did calf stretches until they subsided.
In the end, I rubbed Kwan Loong oil on that leg and never heard from the cramps again! This worked. Brilliant. I don’t like the idea of oil going into my body (I have no idea why but that is how I feel at the moment), but if it works, that stuff can have a special pass.
In the wee small hours, I think about food. In the morning, when I woke up, I don’t. My head is in a very strange space. I find it hard to describe. It is not mental – it is purely electrical/physical. Like I have a set of fairy lights in there that are not working very well. I move, they follow along not switching on when I want. No pain, but more like watching a badly lip-synced film. It doesn’t quite work. I find it very disconcerting and wobbly in my head. I have no real perimeter fencing.
Daisy’s berry brekkie thingy helped and I had a slug of organic cider vinegar too for good measure. That all seemed to help.
Things that are good: clean cotton sheets, a cotton covered duvet with a fitted sheet under so I can have that if I get too hot. The gathers go nicely over my shoulders and the crisp clean fresh crunch is oddly comforting and refreshing. I have two showers a day of just water, no washing goob or soap. I hate the feel, smell, of anything chemical (most odd). I can’t even use deodorant.
Things that are bad: noise, bright light, chemical smells. I just want everything around me in a neutral zone.
The girls say I am turning into Gwynnie – I will rename them Berry and Avocado shortly – and even found myself in the wee small hours looking at natural fibre clothing. Sadly, folk who want this have to be very rich and very thin. I also prowl Ebay at night, which is a very dangerous place to be – suffice it to say, can you really have too many vintage Cartier scarves? I think not. They are very pretty.
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I spent the morning taking things fairly easy as I wanted to go to Turriefield to pack veg. I like going and enjoy the work.
I took a supply of lemon, lemongrass and ginger in my handbag. Daisy dropped me off, after we had a quick chat to the ponies.
I got to work doing what I always do.
And then I sweated. I sweated for the Olympic sweating team. It poured off me as I drank cup after cup of hot water. Horrible.
At about 16:30, I felt very wierd. Odd. Not me. I felt panicky and sort of manic – I remember talking and talking all the time (poor folk). I thought of saying I wanted to go home but it would meaning leaving lots of work and they would have to do it. So I found some unwanted carrots and tomatoes and munched. Drinking, munching and sweating.
My head came back and I stopped feeling wobbly.
Good things: I discovered the water filter makes crystal clear beautiful water for tea – I need one.
Bad things: The leg cramp is still with me.
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Last night (Thursday) : I was tired, so very tired. The busy afternoon had rendered me exhausted. Perhaps I could actually sleep?
We had run out of bananas (only green ones around), so I made a warm smoothie of hemp milk, honey, ground pumpkin seeds and oats. It was wonderful, very comforting and I did go to sleep for the first time naturally.
I woke two hourly to excruciating cramp, leaping out of bed, stretching out and off to pee my usual lake (I have a commode by the bed, which is a god-send otherwise I would have to go downstairs, walk across two rooms, go upstairs again to find the loo – bloody miles when you are desperate).
Cramp: what to do? This is not, upon reflection, cramp that is helped by more magnesium/potassium, etc. Believe me, I have tried. In the wee small hours (“wee” for a reason, I can tell you!), I read the best description ever – “the excruciating, toe curling, leg contorting, wake you from a sound sleep screaming type of pain….” – http://www.spine-health.com/
In the back of my mind, I know that “the spinal canal appears generally stenotic between L3 and L5” (MRI 2014) and the last mechanical findings (2016 MRI) “L2-L3 slight bulge, L3-L4 total prolapse and L4-L5 minor bulge. L5-S1 have been fused.”
With that information, the leg cramps I have are not going to go away. Gah!
Things I like:
- listening to endless quiet podcasts. No shouting, or pub-chat type conversations. More like a really in-depth talk about science, space, religion, philosophy.
- Window shopping on Ebay, though I have to be very careful not to bid and only put it on my Watch List so I can remove it in the cruel harsh daylight of the morning.
- Finding someone has outbid me (phew!)
- alcohol soap, though some have a cloying stink.
- Nice dreams that involve people accompanying me through this journey – so you know, 1st night was spent with the original Poldark (not the sweaty one), 2nd night was with Roger Allam, who was very supportive, and last night was with Caroline Manzo. She was nice and calm.
Things I don’t like:
- The Daily Mail (it’s a drug, a very bad toxic drug). I hate everyone in it.
- BeAnne sleeping outwith her bed – I nearly trod on her head when I shot out of bed.
- Dull headaches that just plod on forever
- the internet not working very fast
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So what happened?
I have decided to write down exactly what happened on Monday night, as well as what steps I took, so I don’t forget it if this ever happens again.
The evening was the same as ever. After supper – homemade stirfry (no sauces, no nothing, no MSG – I don’t cook like that), I lay on my bed as per usual to rest my back for a few hours while everyone else watched tv downstairs.
At about 22:30, I decided to take my night-time drugs. I have taken this prescribed combination for years – 1 x 300mg Duloxetine (Cymbalta) and 1 x 800mg Gabapentin (Neurontin) with absolutely no adverse reaction.☤☤
I lay back down, and a ten minutes later I could feel my belly cramping. I have had IBS so know what to do – head for the loo.
Suddenly, I ran for the loo, sat on it and had acute bouts of belly cramps and watery diarrhoea. I sat forwards, with my head in my hands, feeling like nothing ever before. I knew this was bad. There was a funny metallic drying taste in my mouth, and my lips started to feel tingly and then numb. My trachea was constricting fast and it was becoming increasingly difficult to breath deeply or in large amounts. Rivulets of sweat were pouring down my face – nothing like I have ever had before. I was hot, I was cold, all at the same time. I put the hand towel around my neck.
I had 4 fast bouts of diarrhoea, accompanied by the cramps and then it stopped for a while my belly still felt sore. I stood up and looked in the mirror.
My face was the wrong shape, sort of oval? My lips were huge (like the worst trout-pout ever), but worst of all, my colour was purple. Dark purple. I have never been that shade before. I was very shocked and scared. I think I realised then I was in big trouble.
Trying very hard not to panic, I went and sat on the top stair and leaned forwards, forcing myself to focus entirely on just breathing. Everything else didn’t matter as long as I kept breathing. I made myself relax into shallow quiet breathing. It was all I could think about. Meanwhile OH brought me an iPad because I needed to find out quickly what to do.
Going to hospital was not an option – at best an ambulance would be with me in just under an hour. I didn’t feel I had that kind of time. OH offered to drive me but I knew I would panic more in the car, in the night, going to Lerwick. 45 minutes to Lerwick is a very long time. At least at home, if I could maintain my airway, I would be more relaxed and could have a chance at helping myself.
Once I felt that my symptoms were not getting worse, ie my airway was not going to close up completely and the tiny little airway was staying the same, I googled “surviving anaphylaxis without an epipen”. I found that antihistamine could help. I googled Chlorphenamine (Piriton) and Promethazine (Phenergan) both of which I knew we had. As I didn’t have any rash/hives or itching, I thought Promethazine would be the better choice.
A few more bouts of diarrhoea and my breathing remained stable, if small, I walked slowly my to bed, took 25mg of Promethazine and sat up in bed for 4 hours, just listening to my body’s reaction slowly subside very slightly. When I felt my airway was maintained and not going to deteriorate again, I went to sleep – a fitful scared sleep.
The next morning, I woke up and my lips had started to reduce in size but were not normal in either feel or to look at. My trachea had improved but was still not working at 100% capacity.
So now you know. This is not, in anyway, a what-to-do if you find yourself in a similar situation and should NOT be treated as such. It is just what I did.
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Last night, after the usual hopping up and down to pee and/or leg cramp, suddenly everything stopped, in a nice way!
And I slept from 02:00 until 10:00 – heaven, utter heaven.
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I am now the owner of two EpiPens® (epinephrine injection, USP) 0.3 mg – I shall keep one in the house and one in my handbag and will spend some time learning about them, how to use them and when to use them.
It has been agreed that I will only use one if I then phone 999 to get an ambulance. The EpiPen® is to buy me time, not to replace going to hospital. I feel much happier knowing I have one. If this happens again, at least I will have all ammunition available.
Still sweating buckets, though and a dull headache.
Things I like:
- long long cooling showers
- a silk headscarf or neckerchief (did I really write that?)
- cotton clothing
Things I don’t like:
- wearing my glasses – my eyesight is very strange, out of focus, out of touch
- tight clothing, shoes, anything
- artificial smells
夜 夜 夜 夜
And back down that snake I slide.
Last night was horrid. Cramps, light, if any, sleep, endless peeing, dull headache, twitchy, too hot, too cold, too many bedclothes, not enough. I slept at 06:00 for 2 hours and am not feeling much better as I write this.
I am also very emotional today. I have cried wanting a hug from a friend on her birthday, writing blog out and am probably making ridiculous decisions.
Things I like:
- Kwan Loong oil
- long tepid showers
- oil body spray
Things I hate:
- scratchy bobbly over-washed clothes
- BeAnne’s bark – it gets right in there!
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I think I have just about given up on trying to go to sleep. A few hours at the end of the night (04:30 – 09:00) is all I had. The cramp is lessening but still comes in with an almighty unexpected bang, my internal thermostat is barely working and, as I write this, I am currently sitting with a ice pack on the top of head (it’s a look!)
All night I think. I am angry, I am sad, I feel dread, I am crying, I am tense, I am panicking – everything goes into overdrive and none of it is for any reason. Just the waves of emotion that swamp me.
The brain zaps are odd. I am not sure if their real definition is myclonus jerks (the whole electric shock thing through your body – before the anaphylaxis, I was suffering from these with increasing regularity – or this out of world electric mist in my head that follows me around, making me lose my balance and perception.
I hate it all.
Things I like:
- sodium bicarbonate to wash with in the shower
- my iPad for “window shopping”
- looking up vegan recipes
- science based evidence
Things I hate:
- more sweat
- even more sweat
- waking up feeling totally “locked in”
Small request, please can I have a whole night’s sleep.
Last night, I went out like a light and then woke hourly because of cramp and/or wanting to pee. I am getting very bored of this. The meltdowns, ie massive headsweats are still going strong. It doesn’t much to set one off. I found more cold packs and they live either in the freezer or wrapped round my neck or on my head.
My brain today is electric. I trip up over my sentences because I think faster than I can talk. Ideas and thoughts are everywhere. I feel like there is an electric butterfly in my head and then the slightest kind email or thought and I start to buckle.
Food – I have no appetite and can go the day without eating. I enjoy cooking, though.
Things I like:
- cold packs and more cold packs
- nuts and seeds
- sauerkraut and chilli sauce
- sorting out and getting rid of clutter (material stuff)
Things I hate:
- sweat running out of my head
Last night I after battling with leg cramp, sweats and more peeing, at 02:00, I thought “enough” and took a quinine tablet and diazepam. I mean there is only so much shopping even I can do on the internet. Something had to give and it can’t be my bank account!
I slept, waking up feeling far more refreshed.
This morning I have had no “electric brain” and that was bliss too. Life is manageable without that horrid zapping feeling (the flickering and fusing fairy lights in my brain).
Today, I have had loads of energy. I even think I feel hungry but my sense of smell is now very peculiar. Toast under the grill does not smell like toast.
I spoke to my GP this evening and she described my symptoms of “hyper-sensitivity” to my surrounding world. That was accurate. I said my brain was galloping in front of my speech.
Things I like:
- vegetarian sushi
- Bobble water bottle
- clearing rubbish out
Things I hate:
- Wasabi nasal back draught
- smelly handcream – actually any smells (cosmetic perfume type)
- going round a supermarket looking at piles of processed food.
Last night wasn’t bad. A new calm has arrived and I don’t care if I sleep or not. I wake when I wake, pee when I pee and the cramps are not taking over my nocturnal life. They still exist but I have stopped minding as much. I find this acupressure point can really help – http://www.modernreflexology.com/acupressure-points-for-medical-emergency/
Failing that I get up, have a pee, stretch out a little and go back to bed. I have fewer extremes of temperature at night. A few but less “all or nothing”.
The drenching sweats haves lessened if I don’t do too much and I try stay as cool/calm as possible. My mind is calming down a little but I had a telephone conversation with someone important who was trying to tell me stuff I should understand (tax matters) and I had no idea what they were going on about. No matter how much I tried saying, I honestly don’t understand, (god bless her, she did try many different approaches), I still didnt get it – it was like being 14 again and doing maths o’levels. I am usually a bit more switched about these things.
I am managing to sleep for 4 hours (02:00 – 06:00) now and that is a good sleep. When I wake now I don’t worry about my lack of sleep.
Things I like:
- Not feeling so toxic
- silk scarves
- filter water
- no cooking smells – opening all the doors and windows for fresh air through the house
Things I don’t like:
- tight clothes
- jewellery – it is too constricting, especially around my neck – aaaaaah
- the feeling of utter helpless desolation – it suddenly rushes in and grabs me
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Well, the boat was interesting – 12 hours on an overnight ferry from (Lerwick) Shetland to Aberdeen. We did have a big cabin, so that does help.
I started out well. Took promethazine (for seasickness as I am pathetic on a boat). Sat in the bar and wrote the blog, then had supper and went to bed.
20:00 – I was exhausted and went to sleep until 02:00 – a huge lovely 6 hours. Thank you. It was probably helped by the promethazine. After that it was the 2 hourly cramp/pee regime.
Bing-Bong – 07:00 we reached Aberdeen and I felt increasingly wrong with a sense of the what-ifs. As we had horses with us, their needs took priority. I drove the van off the boat, parked up (you can do this is if you want to get back on the boat for breakfast) and sent my daughters off to breakfast.
My tummy was cramping and I had that feeling of dread again. When I walked, I was wobbly with no balance. Then back came the diarrhoea. I felt very ill. Endless dull headache too.
Two loperamide (found in my handbag) and a long wait. After a while, my world slowly returned and normality was resumed. My headache stayed and never moved but at least I could get on with the day.
Things I like:
- my silk eye mask (photophobia)
- standing under a really powerful shower forever
- filtered water to drink – the Bobble bottle never leaves my side now
- air conditioning (south is hot, very hot)
Things I don’t like:
- being hot
- being bright red and sweating
- having no balance and no perception of the space around me
I am home after a weekend away in Aberdeen with my daughters and two horses and I survived.
No more cramps/diarrhoea.
Still sweats but not as bad
Still leg cramps at night but getting fewer
Still a dull headache which is annoying
So, life is going on. I am glad to be back home and in my bed but I am very proud of myself for finding the inner energy (both mental and physical) to do this.
I seem to lost my adrenaline. I don’t panic as much now. Most odd. I wonder why.
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Someone chop my head off please – dull headache that has been buzzing along all day has now turned into Headache from Hell responding to nothing. I am terrified to take anything much just in case……. I just don’t trust my body anymore.
On a plus side, though, this is the first day I have not had a torrential head sweat. Now that is a first.
So snakes and ladders really.
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The headache had gone this morning which is a relief. I hate headaches and this one had turned into a migraine.
I am feeling more level now – both my mind and my body. I am still a vegan and I still hate artificial things. I don’t know if it is in my mind or for real. Flossie says she thinks I am subconsciously scared of trying anything again just in case it trigger my anaphylaxis. She could be right. I don’t know. All I do know is that when I look at meat, dairy, sugar, most refined carbs (i can manage soba noodles) then I feel sick and disgusted. I am not even tempted to drink anymore.
Instead of pushing myself, I just go with the flow. I have bought crystal deodorant, use oil misting sprays for my face and body and still have two showers a day.
The what-ifs are too great for me and I actually don’t want my usual diet.
I have printed out an Anaphylaxis Action Plan as well as Seizure First Aid. I am not out of the woods yet and I still feel wobbly first thing in the morning.
I would like to go to an Allergy Clinic to actually pin down what it was that did this to me. I am not sure if there is one in Shetland. No one has suggested it.
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Ok, the head sweats seem (touch wood) to have gone. Thank you. I was getting so bored of them and dripping hair is not a good look. Ugh!
But the headaches, oh the headaches. They won’t leave me. I have more time with one than without one. I try to treat it with paracetamol but it doesn’t even dent it. So compound analgesia (Syndol – paracetamol, codeine and caffeine) it is and it does help.
I have energy during the daytime. If I struggle, i drink more filtered water and eat, but my body is still very fussy.
Getting to sleep is easier, although I am still up every couple of hours to pee and/or get rid of the occasional cramp. Some nights are better than others.
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With all the awful things that are happening around me, I haven’t really had time to think about how grotty I am feeling. Perhaps that is a good thing but, for me, it doesn’t help matters and my ability to cope.
The stonking headache continues at a dull misery, sometimes increasing to unbearable.
Oh, the headsweats are back. And I thought they had gone. Can’t they just bugger off for good.
Cramp plus a paralysed dog is not a good recipe for anything. I don’t want to upset or move her, but my legs are agony.
This afternoon, I was suddenly hit by total exhaustion so BeAnne (my darling Patterdale terrier) and I went to bed. I was dreaming the kind of dreams that make you think you are still awake but they were odd, so I probably slept.
In adversity, I can only become stronger because I am not the type to give in but sometimes, just sometimes I wish some of this would stop so I can give my all to the one who needs me most.
⛵️ ⾈ ⛵️ ⾈ ⛵️ ⾈ ⛵️ ⾈
So tired. I am very tired. BeAnne is up every two hours to pee (makes a change from me). I have to carry her to the garden, wait in the freezing cold night and then carry her back. It is the steroids they make her thirsty and then what goes in, comes out. I worry so much about BeAnne. She is my other half, my shadow. I feel very alone without her trotting along by my side. She is always with me.
So all the other side effects that are determined to make an appearance have turned into an inconvenience. My priorities have suddenly changed. I am not important. BeAnne is. I can bury my problems and think about them when I sleep but while I am awake, I am 100% thinking and helping BeAnne. She needs me far more than my body does.
But please could someone lose these effing headaches. Is that so much to ask? Headaches stop me thinking clearly. Lack of sleep does too.
And if the sweating is determined to come back, then I will just have to drip over everyone and they can draw their own conclusions.
🐩 🎎 🐕 🏡 🐩 🎎 🐕 🏡 🐩 🎎 🐕 🏡 🐩 🎎 🐕 🏡
Hot, sweating, anxious, headaches and the cramp, the bloody cramp.
I am up and down. I try food I know I liked and it tastes disgusting. It is very difficult. I don’t live by the hour, or the day but by the minute and it is exhausting.
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I haven’t written in a while. Life has been very up and down, mostly down for BeAnne, my terrier, so all my focus has been on her. My health woes have had to take a back seat and I am now far more used to managing them in public on a daily basis.
When I think I am going to burst into a muck sweat, I keep a flannel in my handbag and I pop to the Ladies loo, rinse it in cold water and just wrap it around the back of my neck. No one notices and I feel cool again.
The nightly leg cramps are still the same but I avoid certain positions and stretches in bed that can easily start them off.
Food is difficult. While we were away south with BeAnne, it was not easy finding anything to eat that I wanted. A vegan breakfast in a Holiday Inn was tinned peaches! Chinese food was really the only edible food because I could have tofu and veg. Life on the road for a vegan is hard.
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Ok, just when I thought it couldn’t get any worse, it did. So what do I do? I manage, I roll up my sleeves and I cope but it isn’t easy.
Yesterday a doctor from the Allergy Clinic phoned up as he had received a letter from my GP and said he had heard about my “little episode”. Fer wha? Huh? Seriously. I maybe wrong but I think anapylactic shock is a bit more than a little episode. Ho hum. Onwards.
The night cramps refuse to give up. The sweats occur when I am cooking or get hot and flustered and my back has now decided to kick in and I am terrified to take anything because I just don’t know what could happen and I definitely don’t want to kick off another little episode (can you tell I am mightily pissed off).
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Well I seem to have a morbid fear of most food. I can just cope with vegan food and that is it. Still no dairy, refined sugar or carbs either. Howeve, I force myself to eat fish as I know it is a good source of protein but it is very much force. I have looked on t’net for an explanation and can find none. Food doesn’t interest me. I worry about what I can bear to eat when I feel hungry and I don’t enjoy it when it is put in front of me. The slightest whiff of anything “odd” and I can’t eat it. From someone who could eat and drink their weight in gin and quavers, I find this wrong on just about every level.
In my head I miss alcohol but when I think I could have a drink, I freeze in case my “little episode” happens again. As I have no medical explanation for my anaphylaxis, I don’t know what contributed or triggered the situation and I suppose that is what is frightening me.
Yes to the bloody leg cramps. They still go on. Nothing helps now, not even quinine, extra potassium drinks or stretching. They wake me up and can take a whole night’s sleep away just by moving a leg into a different position.
Yes, occasionally to the head sweats. Life has to be bad, hot or stressed for them to start up but I can drip at the drop of a hat.
As for my mental health. I am fine as long as I don’t have to go anywhere, see anyone or think about anything. So, living in the middle of a hill with loopy sheep and ponies is fine. When I’m in the outside world, I just put on a front and hope no one can see through it.
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Last night, for my supper, I made stuffed marrow with Quorn mince. At the time, it seemed like a good idea, though I didn’t finish it.
This morning, I woke up feeling like I had flu and a migraine. My head was pounding, I had tinnitus and no energy. I think it was the Quorn. I won’t eat it again for a while.
My body does not like anything but simple food. Miso is ok. I like Miso. Breakfast is chia seeds, hemp milk and a banana smoothie. My Nutribullet has been a godsend. Lunch is avocado pear, homemade gravadlax (no sugar), and two organic low salt rice cakes. Supper is whatever – tonight was falafel and tomato chutney (homemade, no sugar) with braised fennel.
In theory, I want white wine but even the smallest amount gives me a headache.
I am still off gloop (creams) for my face and body. I hate the smell. All far too much.
So, basically, still complaining and still not right.
Oh yes, and my back is now beginning to kick in so I don’t know what I can take as analgesia. Life is complicated. I might phone the Pain Clinic tomorrow and see what they say if I am still hurting.
Sorry for the whinge. You must be so bored of me now.
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One more go with the Quorn. Same thing. Revolting headache, huge sugar pangs (gave in and had chocolate, which tasted very odd) and have decided not to go down that route again. Quorn and me do not get on. I also had massive hot sweat at night and incredible tiredness.
Although, in my head, I want my body to sort itself out or at least return vaguely to normality, it just won’t cooperate. I tried some meat gravy (to go with dry miserable Quorn flannel) and that was horrid and wrecked all of my supper.
So I will return to what I know and like and also remain a complete pain if I go anywhere. I have become the person in the room I hate – a complicated vegan who can only drink water. FFS! I do try not to bleat on about it but life, food and drink wise, is very limiting and I did like to eat and drink pre-anaphylaxis.
What else? Hot flushes and pounding in my ears this morning. My temperature gauge remains broken and I wander around either boiling or freezing. There is no middle ground and before you ask, the menopause left me ages ago so it is not that.
My back is still putting in an appearance and that reminds me to talk to the Pain Clinic.
Off to ring them now, if I can find the phone number.
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Sugar = leg cramps from hell all night. So unfair.
My other nemesis appears to be alcohol. Life is a bitch. No chocolate, no alcohol. Why bother.
Alcohol, in any form, takes over my internal thermostat and plays havoc all night with it. Not good.
Chocolate makes my bones ache and I can barely move. Not much good either.
I am now officially a Bundle of Fun. Yay. Go me!
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This is probably my last Cold Turkey blog entry – for a while.
Basically, what I have learned.
I don’t like meat. I don’t like refined carbs – bread, pasta, noodles
Sugar kills my internal thermostat – I go from highs to lows all night and, during the day, it makes my bones ache.
Alcohol – there is no “good” type. All finish me off leaving me with the headache from hell, even after just two glasses. Life is very unfair.
If I drink alcohol, I crave sugar. Both are very bad and then I try to eat meat and realise on the first bite that it is still disgusting to me.
Do I feel resentful? Hell, yes!
Other things – my temper is short. My spinal pain is increasing. I am trying to come off the last of my painkillers – Tramadol. I need to do this to find out if I actually need to be on it (if you get my gist). So, today, I ache. I ache all over but this could be because of the weather. I need to find out what my body wants, rather than what I am prescribed to want.
Still absolutely no doctor is interested. C’est la vie, c’est la guerre.
I remain scared of new food or pills, just in case. I have no indication of what caused this “little episode” and am none the wiser but, at the end of the day, I can live off the food that didn’t cause my anaphylaxis because I sure as hell have no other answers.
Cross? Maybe. Perhaps it could be one of my little episodes!
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I had my routine check-up appointment at The Pain Clinic at Gilbert Bain Hospital (GBH – best name for a hospital, ever!) I told the Consultant what happened.
We discussed the option of leaving things as they are, allergy-wise, or to refer me to a specialist in Glasgow who could perhaps identify the allergen. I am still very scared and nervous of new things, because I am none-the-wiser and I hate not knowing what the trigger was. So we opted for the referral.
The Consultant also gave me a prescription for the following:
Prednisolone 60mg – to be taken PRN (pro re nata – as the circumstance arises) single dose supply for facial swelling
Chlorphenamine 4mg – PO (taken by mouth “bid” or twice a day) 8 hourly PRN – I can take up to 3 tablets in a bolus dose
And I have to dial 999 – I did promise. All this was written down for me as well so I don’t have to remember it if I have another “little episode (yes, still seething) and it will live in the drawer with the Epipen and the what-to-do instructions. I am trying so hard to be organised.
I also feel much happier that someone has taken an interest.
I am already on the repeat epidural anaesthetic/steroid epidural injections rota which are, apparently, 5 monthly so hopefully this will keep my spinal pain under control. I ache all the time but I am scared to take anything. I am coming off the Tramadol too as I want to see just how much is me hurting and how much is everything else joining in – so just 50mg in the morning. Soon to be none and then I will see how things are.
(highlight of my day – seeing my prescription written in fountain pen in abbreviated Latin – t’is the traditional things that make me happy!)
Edited: I’ve just remembered that while I was telling my Consultant about all this, I was on the verge of tears all the time. I feel very emotional about this journey and I still do. It was and it is a very big deal.