I am having one of those weeks where all the days seem to have merged into one. I can’t believe its going to be Friday tomorrow. Its seems like since last Thursday all I have done is sleep and stay in bed. I am walking around with my eyes closed as the house is crying out to be cleaned and the washing bucket is limping downstairs on its own accord! Well it will have to wait as I’m really not up to playing the good wife at the moment. Thankfully Hubs couldn’t care less, he’s given the place a quick sweep around a couple of times this week, but as he says as long as you are OK the rest of it can go to hell in a hand basket!
Tuesday this week was very scary. As you may have read in the comments I gave up and took Tramadol. I didn’t know that this can affect the neuro muscular junction (like MG), after I had taken it I kept feeling really short of breath but I kept ignoring it as I was so tired and it wasn’t enough to really frighten me. By 12pm Tuesday I was really gasping for breath like a goldfish that had been removed from its bowl. I had to use my oxygen concentrator and take Mestinon within the hour I was feeling good. My eyes opened up properly, since taking the steroids my bilateral ptosis had been bad, so I was walking around looking like I was half asleep. Hubs couldn’t believe the difference he said my yes hadn’t been that wide open for ages.
My response was very typical of someone who has MG to deteriorate when initially starting steroids. That’s why most MG patients are hospitalised before and whilst starting steroid treatment. I have been extremely tired and weak since starting the florinef. I have been in agony with my neck as the muscles have been so weak. Monday night was so bad I ordered myself a neck brace which has come today. My neck feels great in the brace, my spine doesn’t feel so compressed. My shoulders don’t know what to do with themselves as they have got so used to being permanently hunched up to try and give my neck and head some support! So I hope that I will soon start to pick up and get out of this exhaustion rut.
Whats odd is apparently I don’t have MG so there is no medical reason for my body to have reacted in this way to taking the steroids. Very Bizarre unless in fact I do have MG…………..?
I am currently managing about two hours out of bed at a time at the moment. Even when I am out of bed I am having to lie on the sofa. I like to change surfaces so that my body doesn’t develop pressure sores. That would be a nightmare on top of everything else!
I don’t really know what happened to Wednesday it seems I slept through a lot of it. Thursday (today) is feeling like it might go along a similar vein. I am sleeping OK at night (ignoring Monday into Tuesday) I have no viral illness or any reason why my body has decided to just shut down and sleep. Its all very weird. However if my body is saying sleep it must have its own plan and I shall just listen rather than trying to fight it
Thanks for reading xx
I am in so much pain today it feels like I have been trampled by a horse! I can honestly say excluding my toes every joint in my body hurts today. From the base of my skull downwards it hurts, it hurts to move it hurts not to move. I am exhausted with the pain I am in. I slept really well 9 hours but it was interrupted due to really bad night sweats. I was awoken by my pelvis and lower back screaming at me. When the pain is like this I actually feel 3 inches shorter than my 5ft 9in! I feel like my spine is being compressed.
I am holding off the painkillers at the moment as I know tramadol stops me sleeping but at this rate I am going to have to give up and risk not sleeping tonight. I haven’t even bothered with paracetamol as it will do absolutely nothing to my pain levels. Its on days like this I wish I could take something to knock myself out so I could sleep through the worst of it.
My plan of action at the moment is to try and distract myself from the pain by catching up on emails, blogs and the like, But even that is becoming difficult.
The good news is Dr J my new GP is ringing this morning so I can update him on how Thursdays appointment went and see if he has any ideas regarding pain relief and the like. Hopefully I will be able to update you with some good news.
The weather continues to be glorious and very warm for this time of year. I managed to sit outside for an hour or so yesterday. A blackbird has decided to make my neighbours house his song post and its lovely. Every morning I get to hear his full repertoire! Next door have blue tits nesting in their bird box so they keep having a little look into our garden. They have a go at some quite wonderful acrobatics on my washing line. I am now thinking about getting a bird feeder put up. It needs to be in a safe place though a} so the dogs don’t eat its contents – its happened before and b} somewhere the cats cant terrorise them.
I love this time of year when its starts to get warmer and brighter it really lifts my spirits. I am just waiting for the house martins to come back. They come back in a big group and spent several days flying over the housing estate doing a roll call checking everyone has arrived back safely! The saddest part of the year is when they all come back to the housing estate for a couple of days before they venture off again. I know then that the winter is coming and the long nights and cold days will soon be back. We also seem to be in the flight path for Canada Geese, and my my they are noisy when they fly over twice a year!
I just need to kick hubs into action and get some plants for my decking. We lost a lot of our patio plants this winter due to the snow. So my decking is full of empty plant pots! The strange thing is my strawberries have gone mental sending lots of shoots off everywhere. Where I can I have tried to get them into pots with some success. It would be nice to have a crop of strawberries this year that we could actually eat – Mollie our eldest dog swiped all the strawberries last year. The weird thing is she waited for them to ripen before eating them!