Just another quick update

I am afraid it is just going to be another quick update as I am in another cycle of insomnia / pain which means I am exhausted nonstop. My current sleeping habits are, crashing shortly after 6pm and then sleeping until 1am. Then I spend the rest of the night wide awake. Every few nights I manage 12 hours but they are few and far between. It is a little draining to say the least.

I saw my PoTS consultant a couple of weeks ago but I am so annoyed about the way he spoke to me I have found it difficult to process. He told me I spent too much time on the Internet looking up syndromes to have. This was all because I dared to raise the possibility of Poly-cystic Ovary Syndrome. It runs in my family, the condition is hereditary and due to its links with Fowler’s syndrome it would fit with my bladder problems. I wasn’t plucking something out of thin air. I don’t want any of the conditions I have and would willingly give them back to have a normal life. I was then told I was being defensive when I pointed out that if I hadn’t of spent time on the Internet looking up syndromes I would have never have found out about PoTS or EDS and that I wouldn’t be sat in front of him. He tried to make light of what he had said but it was too late the damage was done.

It seems to have been the month for people being told that they are collecting labels. I have seen many other PoTS & EDS patients complain of the same accusation being levelled at them over the last month or so. I think I have traced back the origin of this accusation to a talk held in May at the EDS UK conference, which is summarised in the Beating your limitations  blog post by Donna. The slides that accompanied the talk can be found here.  The first part of the talk appears to have been about collecting labels…….obviously at some point the words collecting labels has been switched for syndromes. 

If there had been one or two of us accused of this by one doctor I wouldn’t think anything of it. However it has been said, exactly as it was said to me by a number of different doctors up and down the country to a large amount of patients. That is scary, we aren’t allowed to mention any problems we are having for fear of being told we are spending too much time on the Internet? That statement sort of falls apart when one of those patients is later diagnosed with cancer and the doctor missed it because he didn’t believe the patient when they told them about new or worrying symptoms.

I will be honest I am still deeply hurt and upset by my consultants attitude. He has never acted in that way towards me before and I have never raised any other conditions with him previously. I just don’t understand why it was said and to what ends?

It’s made me very upset just writing about it and the appointment was several weeks ago now.

I had a gp appointment booked for the following day and that went better. My gp thinks my gynae problems  are fibroid’s and I am having a pelvic ultrasound in September. I was very upset when I spoke to my gp about the consultants accusation the day before and ended up breaking down on him which I hate doing. I feel sorry for the poor chap, he must have a never-ending stream of crying patients to deal with all day. I don’t think I could cope with it.

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I need to end this blog post on a high so I am happy to announce the arrival of my new nephew Elijah, who was born 25th August, weighing in at 7lb 4oz. Mum and baby are doing well. I am looking forward to some cuddles soon!


Update ….

Things have been hectic here health wise over the last week and so the blog post has been sacrificed so that I can rest and recuperate.

Some of you know I suffer with the skin condition Hidradenitis Suppurativa, which is where for some reason unknown to science the body produces abscesses. I am lucky in that in all the years I have had HS it has only ever been stage one and hasn’t moved up in stages. However that isn’t to say that it isn’t painful or leaves you feeling like crap when it happens.

Last week I developed one right under my left butt cheek, which meant sitting down was very painful. I did all the usual things I do to try to treat it without antibiotics but it didn’t work. I ended up on antibiotics and then suffered horrific side effects from the antibiotics. Side effects that can only be described as explosive shits for 17 hours and playing Russian roulette every time I went to break wind.

The side effects wiped me out for three days, I had my first good day yesterday but then I ended up in a massive pain flare where every movement caused pain. I think it was the changing weather fronts that caused the pain flare and it was the worst I had ever experienced. 

Today’s health fun comes in the form of vertigo. I am typing this with only one eye open and the chromebook balanced on my chest.

Someday’s I feel like hiding under the duvet until 2015 is over……