CSF Leak

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!

Covid Vaccine – my experience

/ RachelMorrisMcGeethemyastheniakid / 2 Comments

Last Friday I was lucky enough to receive the Covid vaccine, the vaccine I received was the Oxford AstraZeneca one. I was alerted by text message the previous week to let me know that I could book my appointment to receive the vaccination, as I was in group 6. Which is the current group that is being vaccinated in our town. We are incredibly lucky that the hub for our part of the county is in my small town. I feel sorry for those who live further afield. But for once living where I do has a benefit.

Mr Myasthenia was also messaged to say he could book in as he is also in group six and my unpaid carer. He booked in for 9am and I booked in for midday so that Dembe our Labrador wasn’t left. We were excited and nervous at the same time. I had read quite a few posts on line with people being quite poorly after the vaccination. You get the same when it is flu jab season so I do tend to take these with a pinch of salt. Just because someone else has a reaction doesn’t mean you will.

At around 9.10am on the Friday morning, Mr Myasthenia Kid messaged me to say he had his jab. That the process at the hub was like a well oiled military machine and that he had just finished waiting the required 10 minutes after his vaccination. He had the Pfizer one he told me proudly. The same one that his mum had the week before Christmas. He let me know that he was fine and that he hadn’t even felt the injection go in. Which for him is a huge deal, as he is a little scared of needles. Having to have gas and air for his travel vaccinations before we got married in 2000. He said he would come and get me for mine a bit later and not to worry, he didn’t have a headache or any of the other known side effects.

Mr Myasthenia Kid arrived just after 11.35 to take me to the hub to get my jab. He talked me through the process. I suffer with social anxiety so new situations can cause me to panic a bit. I am usually really good at covering this stuff up and most people who know me wouldn’t believe me if I told them I suffered from social anxiety. My social anxiety has increased during lock down due to not seeing anyone on a regular basis. I would have to navigate the vaccination hub alone, without my security blankets of Dembe and Mr MG Kid. 

I remembered my face mask – I don’t go out other than when Jay takes Dembe out and I sit in the car, so I don’t have to wear a mask very often. I put that on as soon as I arrived in the car park. I was very grateful for my run down of how everything is done at the hub as I didn’t feel so anxious. There was a hand sanitiser station on entering the building. I booked in at the reception area and joined the queue. The lady at reception gave me a leaflet for the Pfizer vaccine but explained supplies were running low and I may be given the AstraZeneca one, in which case they would provide me with a leaflet for that.

My only complaint about the queue was that although the marks on the floor were spaced at every 2 metres they didn’t have chairs at every 2 metre gap. Which if you are crap at standing, many people with a wide variety of complaints are wasn’t very well thought out. The queue moved incredibly quickly. I would say that there were at least 20 people ahead of me and I was at the front of the queue in less than 10 minutes.

Once at the front of the queue you had to wait until one of around 10 booths were empty. Inside each booth was a member of staff booking you onto their computer and the person who was injecting you. I had remembered to print off my list of allergies from my computer which I try to keep updated. I like to try and carry a copy of this list in my handbag or coat pocket when I go out in case I am ever involved in an accident. My dad had been quizzed about his allergies two weeks prior to my appointment. when he went for his vaccination so I knew this was incredibly important. 

Mr MG Kid told me that they had issues locating him on the computer when he was getting his jab. Low and behold they had the same issue with me. It was funny as the girl that was imputing the information onto the computer was someone I hadn’t see nor spoken to since probably around 2010. So it was hilarious when she said “is that Rachel?” and I said “Rachel?” as that is her name too. So she knew all my details to put into the computer but it was a situation where it was saying no! Rachel then asked me if I had anything with my NHS number on. Luckily I did, my list of allergies contains my hospital number and my NHS number. Rachel popped this on the computer and as if by magic my details appeared… exactly the same as she had typed them onto the screen a moment earlier.

Due to my list of allergies, the person that was doing the injection had to go and speak to the doctor in charge. She wanted to ensure that there was nothing contained within the vaccine that I could have a reaction with. When she came back she said that when my medical records had been reviewed by my gp practice they has put me down as needing the Oxford AstraZeneca one due to the allergies I have to a long list of medications. They double checked that I didn’t carry an epi pen or had an allergic reaction to a vaccination previously. Then without me even feeling it I had my vaccination. Due to the fact I am have allergies I was asked to sit and wait for ten minutes in the area they have near the exit. Normally with the Oxford AstraZenica one you can leave straight away. With the Pfizer one everyone has to wait 10 minutes.

I sat in the waiting area and within a few minutes I started to feel hot, weird and I had a funny feeling in my chest. I started to get tunnel vision. So I asked someone for help. I was lead to booth 11 which had a bed on it. I lay down and my face felt like it was burning. As soon as I was flat on my back I started to feel a lot better. I think I simply had a panic attack. The combination of having a nasty allergic reaction previously, being hot, wearing a face mask and being anxious, was too much and I panicked pure and simple. I lay down for around 5 minutes. As soon as I felt ok I sat up, then waited to ensure I was ok  sitting up and then made my way to the exit. Dying of embarrassment for being that person, who is probably being accused of being a drama queen.

Friday afternoon a few hours after the vaccine I started to feel very tired and had the chills. As we have a digital thermometer in the house I checked my temperature regularly as I know some people have spiked a fever after the vaccination. My temperature remained normal, throughout the next few days. I would say I felt under the weather but was quite relieved that I didn’t have the headache a lot of my friends had said that they got within hours of having it.

At 1am Saturday morning I woke up racked with pain, all my muscles were burning, when I got out of bed to go to the toilet I was freezing cold. I felt like I was coming down with the flu. I took some paracetamol and went back to sleep. My left arm where I had the jab was very sore, the whole muscle ached. All day I felt pretty out of it, horrendously tired, muscles aching as the day went on the pain got worse. By 17.30 I went back to bed, I took regular paracetamol and drank loads. Resting and staying in bed was the only way to go so I got a new tv series to watch and lay in bed with that on.

When I woke up on Sunday initially I felt a lot better than I had on Saturday morning. This was temporary though. After a shower and dressing I was wiped out. The muscle pain had reduced and was now just uncomfortable. However on moving around more than a step or two I was shaking quite violently. I was struggling to concentrate and just felt really awful. At 3pm I gave up trying to remain out of bed and crawled back in.

What I also noticed on Sunday was that my glands in my neck, groin, armpits and stomach had swollen up. I had glandular fever when I was 21, many years ago now and since then whenever I am poorly with a flu like illness I end up with my glands swelling up. They get quite painful, they ache and no pain relief helps. The glands in my neck were up so badly that they were giving me earache. I tried to see the bright side and that my immune system was doing its job. Having chatted to some other younger friends I had been quite lucky. Some of them who also had the jab on Friday still hadn’t been able to get out of bed for anything other than the toilet. 

The weird thing was whenever I was lying down and doing nothing I actually felt ok. However attempting to get up and do stuff made me feel awful. So they only thing I could do was just lie around in bed and hope that tomorrow it would be better. 

Sunday into Monday I slept 12 hours, which for me is a ridiculous amount. I usually get by on 7-8 hours. I spent years managing on much less so I am happy to get more sleep these days. I felt ok on waking but didn’t say it out loud as I was terrified the minute I did anything I would be feeling awful again. I have to say thank goodness the side effects have gone. I am feeling so much better now. The glands in my armpits are sore but all the other glands have gone back down. My left arm is just sore at the site of the injection and only hurts if pressure is applied to it . I am at long last out the other side of it. I am not exactly thrilled that I will probably end up going through this again in 12 weeks but hey, my odds with contracting Covid weren’t good and I wasn’t prepared to just take my chances with it.

My Myasthenia Kid who had the Pfizer vaccine, had really bad fatigue on Friday. He felt really drained and his arm was very sore. Saturday morning he still felt quite fatigued and his legs were aching. However this wasn’t enough for him not to go into work. By Saturday evening he was through the other side of it and the only issue he had was a sore arm at the injection site and nothing more. When he had the flu jab with me in November all he had was a sore arm where as I was poorly for a few days.

I would still have the vaccine even with knowing this. It is short term discomfort and feeling rough, to be protected. I know those who are anti – vaccine won’t agree and that’s fine, that’s your prerogative.