And Breathe part two

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. 

And Breathe

There just seems like there is so much going on at the moment it can be hard to take a breath and just relax. I can cope when the “stuff” is mine but when it is happening to my nearest and dearest it can be hard for me to cope sending my PoTs / Dysautonomia symptoms into free fall. So this will just be a short post!

My impending hospital stay has been cancelled. I only found this out when I rang my consultants secretary. For some reason hospitals don’t think life actually exists outside their tiny bubble. The fact people have to work, put carefully orchestrated plans in place for you to be able to go into hospital seems to not register with them at all. I know as well that I will have to ring the secretary again (none of this is her fault or my consultants) because no one will have thought to put me back on the clinic list again. If I don’t contact them I will fall off their radar as I did last year.

The reason for my non admittance is that there are no beds available unless it is a life or death situation. This has been the case in many UK hospitals for months. Why is it happening? The answer is complex, local councils who sort out care in people’s homes when they are released from hospital are being starved of funds, so many people who could be released are left in hospital “blocking beds” obviously not the patients fault. General practitioners are leaving the profession in their droves meaning patients can’t get appointments and are instead presenting at their local accident and emergency departments. Conditions that could have been managed in the community by general practitioners aren’t, meaning people with chronic conditions have no where else to go but their local hospital. It is a mess of catastrophic proportions that has set the NHS back 20 years. The NHS is something this country should be proud of instead its being carved up into pieces by politicians who want to privatise it, mainly because they have shares in the companies tendering for contracts.

The bed shortage hasn’t only hit me but my mum as well. Those of you who are regular readers may recall in July last year I posted about my mum waiting for a major spinal operation. We were told countless lies by the hospital regarding the waiting times, 15 weeks, 20 weeks, its been closer to ten months. Last Thursday (2nd April) my mum received a telephone call to say her operation would be taking place on Thursday 9th April. It was a bit of a surprise for all of us as we had been lead to believe the surgical rotas were completed 6 weeks in advance. It has been a little stressful as my parents try to get everything ready for my mum’s very long recovery period.

Now as my mum was getting her head around the fact that she was having her operation so soon, the goal posts moved again. The operation has been cancelled and moved to next Tuesday. Fingers crossed that it takes place then and we aren’t continually in the holding pattern of a date set only for it to be cancelled again. I know it isn’t a life saving operation, those will always take precedence over a surgery like my mum’s but hers will be a life altering one. As whilst waiting mum’s condition has worsened to the point that she is struggling to walk, having regular falls and is in so much more pain. Hopefully when I post next week she will have finally had it.

As for me a few hours after starting this post I had a telephone call from my own hospital. They were offering to take me in next Tuesday, with mums surgery due to take place that day I declined. I hate hospitals at the best of times but to be in there when mum was having her operation, I just couldn’t do. My own admittance date has been changed to 21st April if there is a bed available, fingers crossed.

Now for some lovely news I am happy to announce that I am going to be an Auntie again. It’s a very exciting time for all of us and helps us all focus on the future.