Thursday 26 August 2021

It's a whinge ( sorry )

 It has been a rocky few weeks for me lately. My health hasn't been great, for some reason out of the blue I have had more issues with my neck and it is triggering more migraines. I am waking up in the middle of the night with them or they are building during the day and I am going to bed with them. I bought myself yet another specialised neck pillow in the hope that this would help and to be fair it does a little but I am still suffering with the headaches / migraines.

It is exhausting to be continually in pain, if the migraines weren't bad enough on Sunday out of nowhere I had a really bloody awful flare up of my bowel adhesion pain that caused me to cry out in pain. It felt like I was being stabbed in the stomach. I took all my usual medications to ease the pain and slowly they worked. It was so draining though and it took a good three days for my innards to settle down and not cause issues. I am so heartily sick of these flare ups for no reason that leave me feeling out of it because I am so tired.

I can cope with a lot of things but when there is no let up and it is one health problem after the other flaring up with no rhyme or reason it gets you down. There are so many things that I want to do creatively but have had to stop for the time being because mentally I am exhausted from the high pain levels and wouldn't be able to focus my attention for long enough to avoid making mistakes.

I have been practising self care as much as I can and trying not to feel guilty about not getting the bits and pieces I wanted to get done. I am lucky in some respects as I don't work and I can spend time when I am able doing my sewing / embroidery crochet. I have no deadlines but it doesn't stop the guilt I have when I have spent yet another day in bed or lying on the sofa. Thankfully Dembe loves a cuddle on the sofa and he is more than happy to come up to bed and sleep now that he is that much older. I just get frustrated as none of us is getting any younger and I feel like I am wasting whatever time I have left on this planet by having to rest because I am not well enough to sit at the sewing machine or pick up my crochet hooks.

The fatigue has been off the charts this last week. I know a lot of this is interrupted sleep and higher than usual pain levels. I always feel more tired than usual when my pain levels are not being controlled. I also made the mistake of running out of my Oramorph so have had two days without anything to deal with breakthrough pain. Despite it being the height of summer I have had more hot water bottles than ever. I am so glad that Mr Myasthenia Kid never bats an eye lid when I ask on a very hot day for a hot water bottle. I can't lie I can't wait for 5pm tonight as he is bringing back my Oramorph for me. I might get things a bit more under control then.

Today I am battling low blood pressure, even sat down my peripheral vision is greying out. I am struggling to read as everything is blurry. It makes life just that little bit harder than it needs to be. I thank my lucky stars that both my phone and my Chromebook allow me to make all text bigger, so I can work out what is being communicated.

I really hate the fact that I am moaning but most of the time on social media I don't mention how I am doing at all. I just don't mention my health at all unless someone asks me a direct question and even then I will downplay it. I just hate how hard everything seems to be at the moment. I know it is just a rough patch, everyone has them. I just don't seem to be able to allow myself to have them. It is as if I feel that unless I am doing something I am not worthy of others love / attention / friendship ( **delete as appropriate ). So I take enforced resting badly which then makes my mood dip. I try hard not to let it get to me but I get so frustrated that my body has decided to let me down yet again.

I am however looking forward to the bank holiday weekend and spending some time with my boys as they keep me sane at times like this.

Thursday 19 August 2021


 I do some really daft shit when I am half asleep but last nights efforts beat anything I have managed previously.

I have spoken at length on numerous blog posts about my dry eyes, they are worse at night and only the other week I had another episode where my eyelid stuck to my eyeball and caused a corneal abrasion that was fucking agony without a word of a lie. I have been religiously putting in my eye drops daily to prevent that situation happening again but this isn't full proof and whilst the medication is building up in my system it is till very likely to happen. So when I woke up last night and felt a little tug on my left eye lid when I tried to open my eye I knew I needed to act now to ensure I prevented another corneal abrasion.

I stumbled into the bathroom, whacked on the light and fumbled around trying to find my eye ointment. The box was empty so I grabbed the tube that had fallen underneath. I pulled my lower lid down and started applying the product as I looked into the mirror. Even in my half asleep daze it suddenly occurred to me what I was putting in my eye was completely the wrong colour.I went from semi conscious to wide awake in a heart beat!  It was too late it was already in and then the pain hit, the type of pain that hits when you have just put Blistex Lip relief cream in your eye. Its main ingredients being Camphor and Menthol. My eye ball was now on fire and all I could do was pray that I could wash this shit out.

Now to be honest the tube didn't look like this however the product I managed to apply to my eyeball is no longer sold in that packaging. The old blue and white metal tube with the bright red lid is the one I had lurking on my bathroom shelf. I didn't even know I had a tube of this stuff a it has been an age since I used it. I can't believe that it was underneath the empty box of eye ointment, talk about bloody fate.

I screamed as the menthol and camphor really began to bite, I got a flannel popped it on my cheekbone and started pouring water into my eye to try and clear the greasy ointment from it. For a few seconds it would feel ok then I would blink and then the burning would start again. Despite me screaming in pain all I got from Mr Myasthenia kid was snores. I kept pouring cold water into my eye, I grabbed some of my artificial tears to see if they would help rinse the lip cream out of my eye. As I did so Dembe charged into the bathroom carrying his bunny and wagging his tail. Although endearing it didn't help the situation at all.

After 20 minutes of continually washing out my eye it stopped stinging but I was left with the feeling of a "Minty Fresh" eye ball which is bizarre to say the least. Every time the cold air hit my eye, it felt cold. It isn't something I would recommend. I was amazed that I didn't end up tasting the stuff as that is what normally happens with eye drops.  I found the mislaid tube of Hycosan eye ointment which would have been lying side by side with the Blistex and put that in my eye. I then stumbled back to bed in my soaking wet t-shirt. Amazingly I went straight back to sleep.

It is now 7 hours later and my eyeball still feels "Minty Fresh" it doesn't hurt it just feels cold. My vision is fine and I haven't had an allergic reaction to it which is a blessing seeing as though I tend to react to most eye ointments. I am allergic to Hycosan and only use it when my eye feel's like it is starting to stick to my eyeball. 

I think I have got off relatively lightly and thank my lucky stars that no serious damage was done. I will now make sure that there is nothing remotely similar in the basket where my eye ointment is kept that could be applied to my eye by accident. I would love to say it was the first time I had done something stupid whilst half asleep. A few years ago now I managed to grab my bottle of oramorph ( liquid morphine) , remove the child proof cap and drink from the bottle. Mistaking it for my bottle of water. As soon as I realised what I had done I ran to the bathroom and made myself sick which is difficult when you have a virtually non existent gag reflex. I then stayed up for the rest of the night to ensure I hadn't overdosed on it. It was really scary for a few hours. Ever since then I have ensured that my oramorph is kept in its box and out of grab reach for me whilst in bed. 

It amazes me how I can function half asleep and manage to get myself into so much mischief.  

Thursday 12 August 2021

I'm back

 I'm back after my two week sabbatical! I am so glad that I did take that time off as, things never ever go smoothly in the Myasthenia Kid household and this "holiday" was no different.

The first two days of our holiday had been written off due to the fact we were having a new boiler installed and two radiators replaced. Everything was going swimmingly until the Tuesday morning when the plumber managed to go through the stud wall when hanging the bathroom radiator. It isn't the first time this has happened, when installing a toilet roll holder for me, my next door neighbour went straight through the stud wall. Yes our house is that poorly constructed and the shock of it is that this is apparently worth £224,000-£234,000 in today's market. How on earth is anyone supposed to get on the housing ladder these days? Anyway I digress. The contractors were  fantastic, the plumber was straight onto his boss and by the evening I had been emailed with a very sincere apology and dates / times of when people would be around to sort out the damaged wall. This was all great but meant a further 3 extra early mornings for us as the boiler installation went over into another day, and three visits from the company's decorators to fix the damage, sand the wall and then repaint.

*** for those of a delicate disposition skip the next paragraph!**

Hilariously on the second day of the boiler installation I came down with a stomach bug and not the throwing up kind. As I was sat on the sofa in the lounge I could start to hear every part of my intestines sloshing around and lots of gas also building up. Due to the stud walls in our house and it being a two up two down I didn't wish to share my experience of the stomach bug with the contractor, so I spent from 2pm until 5.30pm with my arse cheeks firmly clenched hoping that there were no suddenly loud noises. I had to time letting rip with the guy using the drill so that he couldn't hear me because the wind was so loud, honestly I could have filled a few helium balloons. Obviously as time ticked on it became more and more dangerous to break wind. Which led to the worse issue of my stomach just expanding due to the sheer amount of gas trapped. By the time the guy left after 5.30pm ,I raced up the stairs and over the course of the next several hours every thing I had ever eaten since 1973 proceeded to exit my body in liquid form.😂😂😂😂😂😂😂

** it's safe now **

Anyway I was fine the next day, thank goodness as we had the plumber back to commission the boiler and a decorator to do the first part of the repair. By Thursday I was on my knee's with tiredness as I really don't cope with early morning starts. I can get up early but having to get showered and dressed by 08.30am is really hard because there is no time available for resting.

I had been sleeping really well for a change and hadn't had to get up in the night and change my pillows to stop a headache . However for some reason on Thursday evening the neck pain I have been experiencing since 11th August 2020 ( RTC ) came back. I had a break of about a week and then on the 29th July the headaches and neck pain came back so severely I haven't known what to do with myself. I am sat writing this with a neck brace on because my neck is just so painful and I am again experiencing headaches day and night. Some of them build up slowly over the course of a day and then become full blown migraines. I seem to be on a permanent diet of sumatriptan at least once a day at the moment. I have no idea why it has kicked off even worse than it has been in a while. It has pissed me off today as I had planned to get some bits and pieces done and due to my head and neck being so sore I can't and that fucks me off when I am feeling ok(ish) with all the other health shit going on.

We did have a lovely two weeks together, even if we ended up with 5 days of contractors coming in. Mr Myasthenia Kid had to go down to his mum's for two days of our holiday and help her with various things. I really feel for him having lost his dad 19 weeks ago he had to face the fact his mum is terminally ill. He feels awful for being an hour away but he also has me and Dembe to care for whilst working full time. It can't be easy for him. He feels like he is never with his mum enough and no one should ever feel like that. I don't think his father's passing has hit him properly, I am fully expecting him to come down with a huge bump when the American Football season starts as this was the thing that he and his dad could talk about for hours. Although there are people at work that he can chat to about the football, it isn't the same as chatting to your dad about your favourite team - they are Washington Fans. 

So I do the best I can keeping things on an even keel at home, managing my health to keep it stable. Try to support him when he lets me in and tells me what is going on in his head. It is hard but at least he has started telling me the days that he is struggling.

Dembe adored having his dad home for two weeks. The first week Mr Myasthenia Kid was home I barely got a look in. It was the Dembe and daddy show. His little boy followed him everywhere. On the second week Dembe suddenly realised I was still here and then shared his cuddles out equally. To be honest I never mind about the Dembe and daddy Love In, as I know I get Dembe to myself for 5 days a week around 9 hours a day most weeks of the year. I love the fact that when Jay is home Dembe has to show him how much he loves him.

Dembe also enjoyed barking at all the contractors we had here as well! It was only on the third day that he stopped barking at the plumber. On the day when the wall was repainted we got him a Venison leg to chew on. He absolutely adored that and it kept him busy for a good 90 minutes allowing the decorator to come and go without being barked at.

The two week's went by so quickly, Dembe and I are now getting ourselves back into a routine again. Thankfully we have both slipped back into our usual work day routines nice and easily.

I forgot to say on the first weekend of Mr Myasthenia Kids holiday we attended a wedding reception in the evening. Dembe went in his Tuxedo and was the belle of the ball! Even the official wedding photographer took his photograph.

To attend the wedding reception we had to do Lateral Flow tests for Covid. Up until then Jay and I had managed to not have to be tested for Covid. Jay was a bloody nightmare, he is useless with stuff like this. I dread anything where he may need eye drops etc as he can't relax and allow you to do it. He scrunches up his eyes and then tells me he isn't scrunching up his eyes. So I knew the covid tests were going to be a barrel of laughs. Our Lateral Flow tests needed us to swab our tonsils 4 times each and then using the same swab, go up our nose and almost tickle our brains with the end of the swab. I did mine myself no issue. I have virtually no gag reflex, nothing happens when something hits the back of my throat. I can't even make myself sick. I knew Jay would be the complete opposite.

I ended up having to get a teaspoon from the cutlery drawer to hold his tongue down as every time I swabbed his tonsils he gagged and his tongue hit the swab. When I did up his nose with the swab he couldn't stop laughing and then he sneezed around 4 times. Poor sod as the first test he did came back as null and void so I had to repeat the process for him. We were both negative.

When Jay was walking Dembe around the block later that day our neighbour asked him if his test result was negative. Thanks to the open patio door in the kitchen as I had done the swabs our neighbours had been entertained by me telling Jay to pull himself together and allow me to swab his tonsils. Only in our house!😂😂😂😂😂😂😂😂

So as you can see it has been a fun packed two weeks. We enjoyed the wedding reception and got to catch up with a few people I haven't seen since I left work, so that's 13 years. We only stayed 2 hours as I was struggling with pain and temperature control. But it was worth it to just see everyone's reaction to Dembe who was treated like a Prince and brought his own water bowl by the staff who worked there.

It did seem strange not to be blogging or thinking up blog posts whilst I took two weeks off.

 I'm back!