It has been a year.......

It has been just over a year since i was able to last enter stuff onto this blog.

It has been a long year, in many ways it has been filled with issues and the grief caused by these. In some ways it has been a good year filled with new experiences and challenges.

So what has it really brought that was unexpected and not easy to manage??

Let's think back a year, it was summer and things seemded no different really from the norm, sure i was a little more headachy and tired, but i put this down to stress, the same as millions of other people. My usual GP said i was depressed and that my symptoms were normal for a person stressed as i was. After all i had had a breakdown (according to her) and all my ailments were just linked with that........

How lucky am i therefore that i saw a different GP as mine was on holiday and also that i had BUPA and the speed this afforded so my usual GP was not involved in this appointment.

It is strange when a consultant looks up as you walk in and tells you that you don't look well!!

i am paying for this?? A few tests and it was established that if i put my legs together and closed my eyes i fell over!! It was also seen that if i had to walk as on a tightrope, i cannot do this either!!

So onto a scan. That is fun (not!!) you are put in a narrow and claustauphobic scanner with your head in a cage so you can't move it and there you lie whilst the radiographer takes all sorts of pictures. Apparently you can have music as you lie, however the player wouldn't work. I even offered to pay the meter but NO!! thats ok you have a rear view mirror affair so you can see what is happening, the only issue is you cannot wear glasses or contacts in the scanner, so the myopic people like me can only see blurs!!! I can however report that the scanner produces a lot of noise and that this rythmn is at 1/2 second intervals. 45 minutes is 5400 beats - see how bored i was!!!!

So what is now wrong?? is it a trapped nerve, a tumor or more cognitive as the GP said........

No, it is none of these things, it is MS, primary progressive MS, i didn't see that one coming. Other illnesses maybe, different treatments to face possibly, MS probably not!!!

What does it really mean to me, i know there are lots of things out there and MS is a recognized critical illness, but in my small world what does it really mean to a (just) 40 year old bloke??

The Good

well let's us see....

• I no longer pay congestion charge.
• I have a disabled badge so parking is a lot easier.
• Put the above together and i can go shopping at Harrods and pay for no congestion charge or parking, i can park right outside now!!
• I have stopped working for 2009 as i deal with all else, look at my suntan!!
• I am doing a couple of days a week at the Shaw Trust as a volunteer, i seriously look forward to this.
• Because i have a critical illness my critical insurance policy paid me some money, this is invested, it needs to be. Apparently a DB9 is not an investment. Law according to wife!!
• I go swimming every week (apart from school holidays) and only pay as disabled.
• I have an exercise bike, i think i have ridden to Birmingham so far!!
• I can apparently get cannabis on the NHS!!
• I can apparently get Viagra on the NHS!!

The Bad

• I have no money any more!!
• I have no income as such any more as i walked away.
• I am disabled now.
• I get so tired i cannot carry on. I was at a concert and had to go and sleep in the car!!
• Mentally i am just a mess, i cannot yet accept everything.
• I am in mourning for my dashed expectations.
• I am 40 - how old is this!!!
• I have no short term memory, i forget what something is mid conversation about it.

The Ugly

• My phone is a lot quieter.
• You tell people and they physically take a step backwards.
• Contrary to this blog, i so need the spell checker!!
• Switzerland is suddenly a real option and a real reason exists!!!
• I don't feel ill, i am just wiped out a lot.
• I blame every ailment on MS. My shoulders hurt today, it must be MS, or is it carrying 25KG of BBQ gas earlier.........
• I can see no prospects right now, i need to think about going back to work but how and doing what. I may advise and help lots of people at the Shaw Trust but i cannot deal with myself. at all, ever!!

I am sure there are lots more "good, bad and ugly" points i could add, but i think the general idea is here.

So what is what, and what is next??

I help people to do their CV's, jobsearch, interview practices and just general James mentoring, so why can't i sort out myself??

I truly believe and tell lots of people at the trust that we are the luckiest people alive. I know this is contrary to all i say, but i believe it. We are whatever age, assume like me 40, and we can start again in any type of career or job we like, if we sat at school dreaming of space we can be an astronaut, although the training is very punishing!! We can be a zookeeper or a roadsweeper. Our choice is endless and is governed only by ourselves and limits we may set.

That is the problem, i can wax lyrical to others. I really believe what i say here. I know i can do absolutely anything. All i need to do is make sure enough money comes in, but if it is less than i need, well maybe we will just manage anyway!!!

So here i sit, 18th August 2009, 1 year on from my last entries. It has been a long and trying year. Over the time

• I have laughed a lot.
• I have been impossible, shouting at all and sundry and often for the smallest thing!!
• I have (and remain) been low and a miserable person to be near.
• I mourn my life as was, but i can't cry or have closurer yet.
• I guess i am still angry and still ponder the "why me" scenario too much.
• Maybe i just (as my wife says) think to much.

Perhaps if i could just forget and ignore things i can get back on the roundabout that is normal life. Right now i feel i am stuck on the really high slide, i can see the bottom, i know how to get there and that it will be alright and i shall laugh all the way down. But fear keeps me from sliding down. What if i am wrong, what if it is actually terrible. Up here it is safe, not satisfying, and not a solution, but safe.........

Do i slide down, if i do i might want to go on that again, and again and forget the roundabout, can i do this?? What if i was right and the slide down is the worst. Will i go on the roundabout? or will i just run for cover?

You tell me, all advice is welcome!!