Syncope

A Sh*tty Week

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

 You know when you have one of those weeks when it feels like your body is going through a checklist of every condition you have and providing you with all those symptoms? No – lucky you! Yes- you have my sympathy. I have just been through one of the toughest weeks I have had in a long time, it has been relentless the onslaught of health issues. It feels never ending and I have no idea why this week has been like this.

I don’t like to make a big thing of it on social media. Most of my friends also have chronic illnesses and are dealing with their own shit. They don’t need to hear me moaning about mine. There are two people are am truthful about how I am actually feeling on a day to day level, Mr Myasthenia Kid and my best Cyber mate Beverley B. Beverley and I speak daily via WhatsApp we have been really good friends for about 18 months and “friends” for nearly 3 years. Beverley started following me on Instagram just after I lost Mollie and Frankie. We would chat every few days and we just hit it off. She left Instagram so we started chatting on WhatsApp. She is hilarious and always makes me shriek with laughter. Mr Myasthenia Kid and Beverley B are what get me through weeks like this.

I first thought something was amiss last Sunday, we went to visit a friend only to discover we had a puncture in our rear tyre. Mr Myasthenia Kid and our friend attempted to change the tyre but the wheel nuts were too tight to get off. I suddenly remembered we have cover with Green Flag and called them out. By the time we got home, an hour later than planned, it was like someone had taken my batteries out. I was so tired I couldn’t think straight let alone string a coherent sentence together. If I call it fatigue that really doesn’t do it justice. I took my blood pressure boosting medications just in case I had low blood pressure as that make me tired but they didn’t halt the fatigue. By 1700 I was in bed, I really couldn’t handle attempting to sit upright etc. 

Monday

I had my hairdresser come and sort my hair out. I took a photo of myself the other week cuddling Dembe and all I could see were the grey hairs framing my face. I then realised I was long overdue my hair being done as it was last cut and highlighted on 26th July! Whoops. I knew I would be tired after having that done so deliberately ensured that I had no plans at all for the remainder of the day. It was a netflix and crochet afternoon. By 1900 I was shattered again but not as bad as Sunday. The main symptom today was period pains with no period accompanied with terrible hot flushes. The hot flushes were the kind where your bra and knickers are soaked and you feel so manky you need to go and have a shower and change. Which when you have a limited amount of energy to start with is no fun.

Tuesday

 Knackered again. Today it was back spasms. Every time I lifted my arms I would get an electric shock which would cause me to take a sharp intake of breath. My coccyx was also sore all day and I have absolutely no clue why. I just couldn’t get comfortable lying or sitting.I stayed up until 7.30pm as Mr Myasthenia Kid was working the night shift and I knew it would be hours before he would leave for work. However by 19.30 I was so uncomfortable I couldn’t stay up any longer.

Wednesday 

The first day of the week where I have felt relatively ok. I slept with Jay out of the house but I did keep waking with any sort of noise . It wasn’t my usual level of sleep. As I was feeling ok I decided I would work on my wall hanging that I have been making for the last month or so. During the afternoon I noticed every time I stood up my head hurt. Which when this happens I always freak out as it can be the sign of a CSF ( cerebral spinal fluid leak ) leak. I have had two previous spontaneous leaks and I really don’t want to have it happen again. I decide not to dwell on it and use the fact both Dembe and Jay are in bed asleep to crack on with something I enjoy. By the time I finish my neck and back are screaming. I end up getting two hot water bottles one for my lower back and one for my neck. This helps it ease a bit. What I can’t get over is how utterly exhausted I am…..again. The fatigue this week has been utterly overwhelming. I am in the position where stringing a sentence together or holding onto my train of thought is difficult. Jay is knackered too after the nightshift, we end up going up to bed at 18.45. Jay is asleep soon after, I am awake until around 10pm.

Thursday 

I wake up and from that minute on-wards for the next few hours I have diarrhoea. I ended up taking 6 Imodium to stop it as it is exhausting constantly having to get to the bathroom in a hurry. My stomach is cramping really badly. I have a conference video call with Facebook this afternoon and I am wondering if I will be able to a) cancel without too much fuss or b) attempt to get through it. I am a coward and seeing that two other people have pulled out already I decide to put on a brave face and attend the call.  I have so much makeup on trying to look like I am not a corpse it is crazy. I have drunk 4 cups of peppermint tea in an attempt to soothe my angry bowels. Thank god the imodium has worked. However the last 30 minutes of the video conference are sheer agony. Out of nowhere my bowel adhesion pain starts to kick off. It was so bad I was envisioning that I would faint during the video call. I keep praying that whoever is running the meeting will call time before I collapse. I can barely breathe the pain is so intense. It is like a hot knife has been plunged into my abdomen and is being dragged through my entrails. The call ends and I get upstairs as quickly as I can to take every single pain killer available. If I can’t get on top of the pain I am going to have to call an ambulance. I am not being melodramatic, I am on an 8.5 out of 10 on my pain scale. 10 for me is passing out with pain and this is getting close. I message Mr Myasthenia Kid, telling him I am in a bad way. I don’t want to stress him out but I also don’t want it to be a surprise if I tell him I need him home now. Then as quickly as it came on, the pain lessens and disappears over the space of an hour. I am yet again left exhausted, too fucked to do anything. I’m in bed by 1800.

Friday I thought after the week I had the universe may take it easy on me. Who am I kidding? The universe hasn’t finished with me yet. I wake up with a migraine, I take sumatriptan and 3 alka seltzer. I am really out of it and spend the morning lying on the sofa. Doing little bits and pieces on Facebook to put a Guide together for new members on the group I help admin. I am getting fed up with constant exhaustion not just fatigue . The migraine goes, well it recedes enough for me to be able to spend an hour or so on my embroidery machine faffing around. However I have now been left with vertigo. I have to be really careful not to turn my head too quickly or I fall over. Not just stagger but fall over end, up on your arse, fall over catch my drift? Half way through doing the piece that I am working on I am wondering if this was such a good idea. The problem is now I have started I can’t stop. If I do it will cause issues with the design and it may not line up properly again when I start again. Which means 30 minutes worth of work will be for nothing. I have never been able to accept that there will be days even weeks sometimes when I can’t do the things I want to. So I push myself well beyond what I should. I end the day with a resurgence of my migraine, more sumatriptan and alka seltzer. I do go to sleep early.

Saturday

I wake up at 4am, I try really hard for almost two hours to get back to sleep but I can’t. I am still fucking exhausted but no amount of sleep relieves the fatigue. Within minutes of being upright it is obvious that yesterday’s migraine is back for an encore. Why it won’t just fuck off and leave me alone I have no idea. At least the vertigo has gone. At 06.30 I go back to bed, I take my usual cocktail sumatriptan and 3 alka seltzer – I feel like I should have shares in both. I still don’t get back to sleep. I lie listening to a podcast about the Salem Witch Trials, it is interesting but I would much rather be asleep. At 08.30 I give up and get up. I feel drunk due to the tiredness. My head is hurting but it is at bad headache level rather than migraine ferocity. I have got to the point where I really want this week to fuck off and do one. Is it too much to ask for a break? I can guarantee that most social media acquaintances think I have had a good health week because I have produced a few bits of sewing this week. What they don’t see is the other 99% of the time when I am having my arse kicked by multiple conditions . Being able to produce those few pieces of creativity is what keeps me going when a week is as shit as this one has been. Today will be mainly spent lying on the sofa wishing I was able to actually do the things I want to today.

So fingers crossed for a better week eh?

PS I forgot to mention the numerous episodes of pre-syncope throughout the week!

HOT

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

Well b*gger me it is HOT here in the UK at the moment. Now I know the rest of the world laughs when anyone in the UK says it is hot but please remember heat is relative to what you are used to. Also because our Summers are traditionally not that hot, 24 degrees Celsius is probably about average. However this last week temperatures have been rarely lower than 28 to 30 degrees Celsius making it unbearable for me  and for poor Dembe.

In the UK we don’t do air conditioning unless it is in a shop or a very fancy home. Air conditioning units are beyond a lot of peoples means at around £350-450 upwards. Our homes have been insulated to within an inch of their lives. Meaning they stay hot no matter what doors and windows are thrown open. Believe me I have tried the keeping the windows closed and curtains drawn during the day to keep the temperature down but it didn’t work. It ended up even more suffocatingly hot than usual. We have the loft hatch open in the hope that it gives the hot air somewhere to go. But other than living in my refrigerator I am just soldiering on.

The heat and Dysautonomia do not mix, I can’t regulate my temperature on the best of days so dealing with this unrelenting heat is a nightmare. Standing up my vision is greying out, I have upped all the medications I can to try and retain fluids within my system but it still isn’t enough. I am ending up wetting my hair multiple times a day to get my body temperature down and get some relief. I have got so fed up with it this week that I have bought some freezer blocks to keep me cool during the day. At night we are using hot water bottles that have been filled with cold water and frozen during the day. This at least is helping us sleep. Sadly though my sleep is being interrupted by heat induced migraines.

I never used to suffer with migraines caused by the Summer heat until last year when I got an absolute shocker of a migraine on the Whitsun bankholiday ( a national holiday on the first Monday of June). It happened to be the first day that was very hot and I had spent a lot of time outdoors. I put it down to day drinking and being dehydrated. However the same thing happened this year and there had been no alcohol involved. I had been out in the sun a lot as it was the day Jay and his brother scattered their fathers ashes on Dartmoor, I had spent the time with his mum out in the garden. Again the migraine that followed was another shocker.

It is so frustrating when you get a migraine due to the weather as stopping it happening is out of your control. I have now ordered some freezer blocks from Amazon to freeze and then use during the day to keep cool. Every night for the last three days I have ended up going to bed with a migraine either brewing or in full swing. Last nights was particularly bad as it came back again at around 3am. I woke up to a world of pain as my whole face felt like it was being smacked with a shovel. Thankfully it did ease off with the help of sumatriptan which has been a game changer with my migraines and it makes me angry that despite me visiting the gp practice on numerous occasions this wasn’t offered to me until 2020 when my migraines were making me lose 48 hours of my memory. Which was incredibly scary.

Dembe has also been suffering with this heat, we have had to cancel his Wednesday afternoon walk this week that he adores with Sophie, Beth and the gang as it is just too dangerous to walk him as it would be risking heatstroke. Sophie did offer to walk him in the morning but as Jay is home and he would walk him at 5am there was no point. During the day because Dembe simply refuses to use the garden to go to the toilet, even a wee (!) Jay has been taking him to the shaded lane that runs near our house. Dembe gets hosed down before and after and Jay always checks the temperature of the tarmac before walking him to ensure he doesn’t burn his feet. I am glad he is that much older as he is less fizzy and will sleep during this heat.

To help him with the heat we bought him a splash mat, I think Jay enjoyed it more as Dembe seemed deeply suspicious of it, only going on it when the jets were off.

He really enjoyed splashing around in the water that had collected in the pool. I am happy as long as he is enjoying himself and staying cool. He also likes lying down in the shade on the flag stones on the patio.

We hose this down regularly to ensure it is lovely and cool for him.

We may get a slight reprieve over the next few days as we have been forecast heavy thundery showers. I really hope so as we do need a short break ( at least ) from the onslaught of the heat.

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There will be no blog post over the next two weeks as Mr Myasthenia Kid is on leave from work and we are planning on spending the time together whilst there are some contractors here doing some work on our house.