Mums operation

I am very happy to report after months of waiting mum has finally had her "urgent" spinal operation and is recovering well.

As you can imagine its been a stressful week. On Monday mum and I were saying "well it can be cancelled right up until the last-minute". Mum was refusing to pack her hospital bag as last time she did she had a phone call five minutes later to say it had been cancelled.

Mum was in theatre for five hours and the operation was much more complex than originally anticipated as these things invariably are. Mum ended up having to have her spine broken so that they could correct the dislocation and fuse her vertebrae. 

After surgery she was in a lot of pain and ended up being in recovery for a few hours whilst they got on top of it.

It was a very long day for all of us patiently waiting to hear any news. If I am honest Tuesday felt like a thousand days rolled into one and I had barely slept the night before because mum's impending operation was playing on my mind.

I was lucky enough to speak to her today (Wednesday) and although on morphine and a little out of it she was sounding an awful lot better than I thought she would. She will be in hospital until at least Friday due to the extensive nature of the surgery. She is very wobbly on her feet and can't walk at the moment. She has managed to get out of bed and sit on a chair, which after what she has just had done is a major bloody achievement as far as I am concerned.

As I am exhausted from the stress of it all, as you can probably imagine, this is just a short post to let you know that finally mum has had her operation.

For more news on mum's recovery please visit The Myasthenia Kid on Facebook where there will be more regular updates.

What's the word I am looking for?

One of the symptoms I have developed since becoming ill or should I say sicker to the point where it could be ignored no longer is Aphasia. Its pretty mild and fluctuates on depending how tired I am. I mainly struggle in finding the right words for objects or replacing the word with a completely different one. Names are also a problem, I can run through all the male names in my family before calling my husband by his first name and that includes the dogs names before I manage to get it right.

Yesterday for example I thought to myself "I must really decaffeinate myself again" (it even affects the words in my thoughts). I didn't intend to go caffeine free what I actually meant to say to myself was "I must really catheterise myself again" as I hadn't done it for around a week and I am still in the practising stage. That one really made me laugh however there are times when the aphasia is so bad I can only retrieve one word for multiple objects. It becomes incredibly frustrating for me and poor hubby can really struggle with translating what I really mean.

It is exasperating for me as 9 times out of 10, the word is there on the tip of my tongue, it's just when I go to say it, it is replaced by another word. Other times I can not remember the word at all and this usually happens when I am utterly exhausted. My brain can not retrieve the word nor come up with a suitable replacement. For someone who loves words, who writes and just wants to say a simple sentence out of all the crazy symptoms this one alone can drive me to tears.

A few weeks ago every object I went to name came out as "sofa", not at all helpful when the words you wanted were coffee table, washing machine or bookcase. The scenario was my husband had mislaid his keys, I knew where the keys were or had an idea. When I tried to tell him that his keys were on the coffee table it came out as "the keys are on the sofa". For around five minutes I persevered with trying to give him places where his keys were, all the time replacing the correct word with sofa. I felt like the village idiot and it didn't help my husband find his keys.

There have been some hilarious moments with the aphasia when I have replaced words with something quite ridiculous. A few years ago hubby and I were driving along a narrow country road with low hanging trees. All over the road and the hedgerows there was hay that had been strewn from a passing vehicle. I turned to my husband and in all seriousness said "There has been a big helicopter through here". My husband started laughing and replied "I think you mean lorry (truck)". How on earth my brain thought a helicopter was remotely like a lorry I have no idea. With aphasia you know what you mean and in your head the sentence seems correct until someone points out your error. Other times you are left struggling to complete a sentence as your mind goes completely blank and for the life of you, you have no idea what the words is.

I have also sent my husband on countless fruitless searches for things when I have known the location of something but sent him to the wrong place. One of my favourite locations to name is the shed. I seem to have the word shed permanently on the tip of my tongue. So much so that hubby will ask me to repeat myself if he knows for sure that something like my many hot water bottles are not stored in the shed. My second favourite location is the airing cupboard, usually said when my husband has asked me to repeat myself. Again he knows more often than not that the item requested is not stored there. How he doesn't brain me through sheer frustration I have no idea. I honestly do not think I could ever be as patient with him as he is with me.

I have raised the aphasia with my consultants who have put it down to cerebral hypo-profusion - as in not enough blood / oxygen getting to the brain. It makes perfect sense to me as this is something that has developed over the last few years which is when my symptoms have rapidly worsened.

The weirdest thing is my ability to swear (curse) has not been effected at all by the aphasia. Those words come to me very easily unfortunately!

*  *  *

Mum update

Mum's operation has been rescheduled to the 28th April - next Tuesday. If she has had her operation I will update you in my blog post next week.

Baby update

My sister had a scan last week and she is expecting a ...........boy!

Hospital Stay Update

As far as hubby and I are aware I will be admitted for tests w/c 11th May.

Health Update

I have cellulitis again. 5th bout in 10 months deep joy!

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 mum's 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. 

Ten things....

As this is being posted the day before Good Friday, I thought I would make it a short and fun post. I am still recovering from a UTI so don't have the energy for one of my long rambles. I hope you enjoy it and please remember most of this is dripping with sarcasm!

Ten things I hate

1. People that tell me I don't hate things, that I dislike them immensely. I know my own mind and believe me I know when I hate something no matter how irrational or illogical you think it is.

2. Child proof bottle tops. Now obviously I know they are there for the safety of children I have no argument with that. It is just that at the age of 41 I would have thought I would have been able to master the child proof bottle top. So many of my medications come in these bottles it drives me to distraction. When I hear the click, click, click that tells me yet again I have failed I want to throw the bottle against the wall. Saying that I also have problems with tablets in foil packs. I don't know what the answer is other than have a pharmacist hand deliver my medications as and when I need them.

3. Rustlers spare ribs. If you have no clue what I am talking about they can be seen here . It's not the spare ribs themselves I have an issue with it is the way the smell. Being vegetarian I have never eaten them they are my husbands fast food snack of choice, to me they smell of a combination of dog faeces and burnt human flesh. Before anyone decides to comment on me being a vegetarian I will set the record straight - I have no problem if you want to eat meat. I have been married to a carnivore for nearly 15 years, if I had an issue do you not think he would have been harangued into becoming a vegetarian? Maybe this one should have been combined with number 6 however the smell of these deserves a category all of its own.

4. Daddy long legs (for my overseas friends you can see them here) actually its a dead heat between Daddy long legs and Flying ants (even the picture of them makes me feel sick). Both make me feel physically sick on sight. With summer rapidly approaching it means its time for the Daddy long legs to start terrorising me. I have a break from the flying ants until the end of July beginning of August. When either of these land on me I can feel myself crawling out of my own skin. Such is my problem with Daddy Long Legs years ago during a disciplinary meeting at which I was taking notes one flew into the room. Due to my screaming the meeting had to be adjourned until the thing was removed. Not very professional on my part but as I said I really dislike them immensely, no that's not true I hate them!!!

5. Dirty toilets / cleaning toilets. I know that sounds stupid you can't have a clean toilet without cleaning it, unless you can afford to have someone clean it for you. I have never enjoyed the process of cleaning the bog. If and when I do get up close and personal with the toilet, I have very long rubber gloves on and lots of bleach on hand. It is one of the few jobs I can do as it involves sitting down and if I am honest its one of the few things my husband is crap at - pun intended. I actually can't remember a time when he has cleaned the toilet. What I really hate is using a dirty toilet. You know the type I mean a huge black pubic hair staring at you invitingly from the seat and a nice colour chart of skid marks decorating the bowl. I don't care how dirty your home is there is no excuse in my book for a toilet looking like that, unless you have been very, very ill overnight and in that case I shouldn't be using your loo anyway.

6. Phantom smells. Since I became ill or should I say sicker in 2007 I have suffered with the phenomenon of phantom smells. When it happens it's not just a little whiff of something its a smell that you can't get away from. I smell anything from dog urine, stale alcohol or faeces on a bad day. On a good day from 20 feet I can tell if you washed your hair that morning. The smell of unwashed hair now makes me feel sick. It's almost as if I am not suffering from the phantom smells my sense of smell is acute. If my sense of smell becomes distorted I know that I am heading for a collapse. My husband, who only drinks a couple of times a year has been accused of drinking (by me) whilst he has been out at work which is simply not possible. I have days where I am convinced the whole house smells of stale urine despite the decking being washed down and treated with Jeyes Fluid. I hate this because a bad smell can ruin my day. No one has ever been able to tell me what is going on with my sense of smell. I have spent hours Googling phantom smells and have come up empty-handed. Nothing I have read on-line fits what I experience. I have never bothered bringing it up with my doctors as there always seems to be another symptom that needs more urgent attention. If anyone reading this identifies with what I am talking about please leave a comment!

7. Smoked Foods. There are quite a few foods that I hate Stilton, mushrooms and marrow to name a few, my revulsion towards them is nothing compared to my husbands phobia of mayonnaise. Who even knew that was possible but confronted with mayonnaise he spontaneously vomits and his fear is getting worse. Anyway back to me, you know how I love to hog the limelight lol! However I really loath smoked foods which I find very odd considering I am a smoker (please no moaning at me for that). Smoked foods make me gag! Enough said.

8. People who assume disability is a lifestyle choice. There seem to be many more of these people around now than before 2010. I suppose that is only to be expected when the disabled are being demonized in the press the way have been over the last few years. We have been divided into two groups, scroungers or the deserving disabled. In effect we have been dehumanized, we are a burden and in some political circles the whole reason for the world economic crisis. I would do anything rather than live like this. It wasn't a choice for me it just happened. I do wish people are one accident or illness away from relying on help from the state. To suffer misfortune in this way is not a choice. To be marginalised because it did happen is not the sign of an evolved society.

9. People who assume they know my illness better than I do having looked on Google. The Internet is a wonderful thing, without it I wouldn't be able to write my blog and keep in contact with the outside world. However people don't seem to use the same scepticism when reading articles on the web as they do when reading the printed word. They also believe that one article will provide them with all the information they need, rather than actually researching the issue properly. The same is true for medical professionals. I have sat in a hospital bed whilst the medic treating me has Googled my condition. They have then come back and tried to tell me about the condition. Wouldn't it have just been easier to talk to the human being who is suffering from it? It also seems difficult for them to grasp that although I was initially diagnosed with PoTs my condition has progressed and is now called (by my hospital consultant) Severe Autonomic Nervous System Dysfunction. I have given up trying to get most people medical or not to understand.

10. People who lack manners. I could write a post about my many grumblings about this modern-day phenomenon of a complete lack of manners by people. All it would do is make me look like a grumpy old woman but this lack in common courtesy really does grind my gears. I am not saying that I am brilliant in this area I am not but I do try, sometimes I wonder why I bother though when the people you make the effort for react to it with wide-eyed consternation. A thank you goes a long way and can wipe out any previous indiscretions on the manners front. I am amazed how many people do not say thank you in a wide range of situations. I always say thank you when people make way for my chariot (wheelchair) but you would be surprised how many people ignore me when I say "excuse me please" when I wish to get past them. People seem to have forgotten the basics but are happy to berate those who they perceive the common courtesy has been denied by. They are quite happy to treat others in their cavalier manner but return the treatment and you are the worlds worst. As I say I could write at least two posts on the subject but it would fall on deaf ears to the people it was aimed at. With those types of people I find its best to kill them with kindness knowing full well you have the moral high ground.

This has been fun but like all good things it has come to an end. For those of you celebrating Easter or just spending time with family over the long weekend Enjoy!

Rach xx