Month: August 2021

It’s a whinge ( sorry )

/ RachelMorrisMcGeethemyastheniakid / 1 Comment

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.

Mischief

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

 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.