Thursday, 28 October 2021

Self care

 Firstly I am doing a lot better than I was doing last week. I got some diazepam from my doctor which stopped the spasms and allowed me to just reset everything so that I wasn't in constant pain with the occipital neuralgia.

I have had a few more bouts of bowel adhesion pain, I have no idea what is triggering it other than possibly stress. As usual there are things going on that I can't blog about as they are deeply personal and private. The stress is also contributing to a few visits of insomnia. Today my tired is tired! 

So I have reluctantly decided that I need to have a break and step away from the blog for a couple of weeks. Coming up with a post every week is adding more pressure to me and life is already hard enough at the moment. I would have been having a break next week anyway as it is mine and Mr Myasthenia Kids birthday. When I will be back? Sadly I can't say at the moment. I don't envision it to be any more than a few weeks at most. 

Sometimes I just need to catch my breath and take the pressure off myself. Mr Myasthenia Kid, Dembe and me are all ok, so please no one panic about us. There are things going on outside of us which is not for me to discuss and for it to be out there in the world. At some point I will be able to say just not right now.


For now self care takes priority.

Thursday, 21 October 2021

A Sh*tty Week

 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, so slept lightly . 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!