I am exhausted, I have been “normal” and been out of the house two days in a row and not for completely medical reasons.
For regular blog followers who don’t follow the The Myasthenia Kid on Facebook, my mum’s operation was cancelled on Monday 12th at 3pm, she has now been booked in on 28th April. So fingers crossed it is third time lucky. It is quite stressful waiting for her to have this operation. She needs it so desperately and the pain is so bad for her. Every day I worry she is going to have a bad fall and end up breaking bones. So we wait and hope that it will happen on 28th.
I had my dermatology appointment today for my dodgy mole. I had two dermatologists look at it and they are not concerned at all. I have been discharged from their service however if I have any concerns in the future I am to contact my gp. I have many raised moles on my body so I don’t think it will be the last time I will be seeing them. The consultant I saw was really lovely, the registrar was not very welcoming – not rude but you could tell he was either shy or just felt out of his depth with my medical history. Before even looking at the mole he was panicking about local anaesthetics as they don’t work very well on me. He asked me how I manage to have dental work, I told him most of my dental work is done at the speed of light as I burn through locals very quickly. He went quite pale.
He seemed quite unprepared as one of my moles I needed checked was in an intimate area. He asked me to undress but provided no blanket or gown for me to cover myself with. When I told him I wasn’t going to sit half-naked unless I had something to cover myself up with he quickly went and got me a gown. I was really surprised that he thought this was ok, when moments earlier he was asking me if I needed a chaperone, despite my husband being in the same room. It seemed he was more interested in keeping himself protected than protecting my dignity!
As both my moles were ok we were in and out in around 15 minutes. I had booked a dog sitter for 4 hours – just in case, so hubby and I were furbaby free (furniture would not be eaten and the dogs would not be serenading the neighbours). We headed off into the city to have a mooch around the shops. It was the first time we had been out of the house together for a non medical reason for probably 6-12 months. No that wasn’t a typo that’s how long its been. I actually can’t remember the last time we were out together alone.
I also went out yesterday for non medical reasons (as in no gp or hospital appointments). My friend H took me out to the local garden centre. It was quite a big deal, as previously when friends have taken me out I have used crutches or my sticks rather than my chariot. I have a really big issue about my friends seeing me in my wheelchair or me needing them to push me. Yesterday marked the first time ever that I had been out in my chariot with a friend. I was very nervous about it. H needed a crash course on assembling the chair and she picked it up like a pro. I decided that I was going to propel myself as doing that means whomever is with me can walk along side me and chat rather than have me have to turn around and speak to them. You don’t think about these things until you are in a wheelchair.
As its been a while since I have been out in my chair I had forgotten exactly how wheelchair unfriendly the outside world is. I managed to leave a nice black line down a newly painted white plinth because it was just a few millimetres too small for me to get past comfortably. I also managed to destroy one Wellington boot stand. Normally that would leave me mortified but for some reason it drove me to hysterics. I wasn’t even embarrassed that I had knocked it over. Poor H had to hurriedly pick them up whilst I negotiated an even tighter right turn. Luckily that was the extent of the damage caused.
I stayed out for 2 1/2 hours (go me!) it left me utterly exhausted. I went to bed for two hours when I got home but as usual when I have been out I return wired tired / amped. My head is buzzing from the excitement of being out of the house my body is wanting to melt down. I battled on until 7pm and then crashed spectacularly, falling asleep, well actually it was more of a horrific postprandial episode that I didn’t come around from until 10pm and then it was only briefly.
For some reason the postprandial collapses are worse than normal and due to one starting right now I am going to leave this and come back when it’s over!
Ok so I am back its is getting a bit boring now having to rest / collapse every time I eat. It has been really awful since yesterday. My heart pounds so hard in my chest it feels like my ribs are going to shatter. I become unbelievably tired as my blood pressure drops, today I recorded 79/40 just before I had to go to sleep as I couldn’t stay awake any longer. It seems to start my heart off in a funny rhythm where it pounds in my chest for the rest of the day grrr!
Anyway I digress both yesterday and today I have had a lovely time in the outside world. It makes a change from the four walls I normally view. I am beyond exhausted and I feel like I am having an out-of-body experience.
My own hospital appointment for a week of tests has been pushed back until May at my request. There was just too much going on this month for me with mum’s operation, my dermatology appointment and my sisters scan for her baby. There was no way my blood pressure was going to be my normal low, it would be raised with the stress of it all.
So I am a very tired but happy bunny today.