It's been too long.....

Oh dear it's been so long since I have written a blog I'm not quite sure where to start!

I suppose the beginning is as good a place as any so here we go.....

There have been lots of changes happening in my life recently and much adaptation has taken place to bring me to where I am now.

So where am I?

Well apart from sitting in my chair in my living room I am trying to decide where exactly my head is these days. Events have picked me up, overtaken me, shaken me around and dumped me back here full of confusion, let me try to explain some of what's been happening and how I have-or have not- dealt with it.

My own medical condition has progressed at a bit of a run recently, the last 6 months have seen me become less mobile, have hands that work somewhat one day and refuse to do anything resembling useful the next. Pain levels have increased and I have forgotten what a full nights sleep is.

I attended my routine (for routine read 'we can't do anything else for you at this time but will still see you just to make you feel loved) back in August, the consultant was as always concerned about the progress of both conditions , he is rheumatology and responsible for the psoriatic arthritis so although he always asks about the psoriasis he isn't able to actually 'do' anything about it, that is down to the dermatologist who has discharged me from his care 3 times so far only to have my GP send me back each time she 'doesn't like the look of it' 

Anyway I digress....my lovely kindly concerned rheumatologist was almost beside himself with glee this visit as he informed me there was a new drug being trailed (very very early days) and it was specifically for my condition (psoriatic arthritis) he thought of me straight away, would I consider taking part? 

Well yes of course I would......

So a week later all the information came through.....

Early stages they said....they weren't joking!

It seems 1,790 people had been/ were on this trial drug....out of those only 1 had my condition, the very condition this was supposed to be for and they had only located 1 other person who actually had it, now I know my form of psoriasis/ psoriatic arthritis is one of the rarer ones but 'that' rare?

Anyway, there were 3 pages of 'risks' associated with this new wonder drug and one small sentence stating 'this may not benefit you but you may be helping future sufferers!

Well excuse me, I'm all for doing my bit for society etc but this wasn't looking hopeful at all. The booklet took some reading so I set it aside to re read later before making a decision about going on the drug trial, the nurse was supposed to ring me the following week and it also suggested I discuss it with my GP who knew my condition etc .......but that's a whole different blog. 

A week later something happened that shook my very foundations, threatened my sense of security and my very sanity for a bit....

Trevor my husband, my carer and my rock was diagnosed with leukaemia, the very word struck fear into me and my family. Trevor was as always quite philosophical ' what's the point in worrying until we know what we have to worry about' is and always has been his mantra but me.....I'm the opposite, I need to know what I am coping with and how I am going to cope with it so I did what I always do, went to pieces for a few days, absolute shut down of all common sense and enough tears to float a boat on!

This lasted about a week until the fact my family had also reacted badly to the news and needed me to support them got through the fog and I pulled it together.

We had to wait a month for the appointment that would tell us what we needed to know and in that time it was hard to carry on as if everything was normal because of course it wasn't. 

So I came off Twitter altogether, I was finding it impossible to 'just chat' normally about everyday things with this big cloud above me and really didn't know how or even if I should impart the information I had, how do you tell people? Do you just suddenly blurt out 'oh by the way my husband has leukaemia?' 

So it was safest to ignore social media at least until we had a clearer picture. 

So a month later we attended the clinic to talk to the specialist consultant.

I sat next to Trevor in the waiting room and looked around me as you do, there were a lot of people waiting and coming and going, some obviously undergoing treatment and I remember thinking about the people, family members that had accompanied them that day 'how are you coping?' I wanted to ask, ' what has this meant to you?' 

That probably sounds quite selfish but somehow it seemed easier at that time to be the 'patient' because things were 'happening' to you, people were going to treat you, look after you and you knew it was a journey you had to take and you would be supported all the way.

 Does that make sense?

I freely admit I have a dread of the Unknown, I crave organisation and to have control of myself and my environment as much as is possible. This was completely out of my control and I didn't know know how to 'fix it' 

The news was actually a lot better than I ( forever the pessimist) had feared, it was in very early stages and not an aggressive form of leukaemia so no treatment required at this time, watch and wait was the game plan, regular blood tests to keep an eye on progression and if/when it reached a stage it needed treatment it was manageable.

This type of leukaemia is considered a chronic condition nowadays and there's no reason Trevor can't live with it for years without too much effect on his everyday life.

I am sure he almost enjoyed the extra coddling and attention during that month but we have all now settled a bit and are determined to live each day as it comes and although we know he has it and yes it's still scary as its lurking there we have put it in the background for now and returned to our own form of normality. 

You will notice that the government have not featured in this blog at all and rightly so but I will say this...you may well be, or strive to be one of the 1% they hold in such awe but no amount of money will protect you if you are faced with serious or ongoing health problems and remember this, those you have hurt on your journey will not be there to support you should you turn the wrong corner in life and through no fault of your own become sick etc.

I thank my lucky stars that We have a close caring family and superb friends as you never know when you might need them to be there for you and mine were and are and always will be.