Nothing like being a bit nocturnal......

Its been a long time since I sat here in the wee hours to do a blog entry. Back then it was because Methylprednisolone was keeping me awake but right now I am being kept awake for other reasons.

The difficult thing is, I don't want to say why!!! I can tell you on Friday I hope but at the moment, there are so many thoughts buzzing in my head that I just cant get to sleep. I don't know if updating my blog will help but it gives me something to concentrate on so that can only be a good thing.

So what kind of thoughts are racing through my brain then? Well, amongst other things I tend to worry a lot lately, hopefully part of that will be sorted out later this week though. I also worry about what the future holds for me, I worry about the past and how I could have changed small things along the way and how I felt I wasn't strong enough or assertive enough to achieve certain goals. I worry about missed opportunities in life and wonder if I would be a different person because of them. I just worry about all the same things everyone else worries about with the exception that until very recently, I did not worry about these things at all.

When I give it a good thinking about, I come to the conclusion that the events of this year have changed me. Much as I try to deny it, I have been rocked to my core by it all. I realised that I am not invincible, I am a mere mortal and as such I have to suffer as everyone else can along the way. I have shown emotions this year that I never thought I would show on the surface and in doing so I have realised that I need the support of people around me. I need to be told that everything will be OK and I need to be re-assured. These are all qualities that I thought were my mission to give out in life so its slightly uncomfortable to be in a position where I need them too!!!

Lately, I seem to have developed a small fear of "not doing anything". By that I mean that as long as my mind is occupied then everything is OK. When I switch off and my brain goes quiet, at bedtime for instance, my mind then starts to race with all of the above worries that I suppressed so well when I was busy.

Another thing is that this is exactly what Kerris used to do and I would lie there telling her just to relax and forget about it all and go to sleep. Now the worm has turned and I feel her pain!!!

OK , so there is a lot going on up there but realistically I should be thankful that although I have had a few tests and visits to the consultant recently, nothing has progressed and as long as life is like that then I should be happy. I should be happy about the fact that I have a beautiful wife, 2 great kids and a loving family around me and I am always thankful for the help we get from our respective parents. I am happy that we live in a nice house, have no real financial worries and that we generally get to do a lot of nice things along the way. So there is a lot to be happy about and with this in mind, I am on a roll so I will keep those thoughts exactly where I need them to be, at the forefront of my head and go back to bed!!!

You see, I always worry that I have to end on a positive note...........

Falling apart!!!

I think that turning 30 a few years ago was the beginning of the end health wise!!! I was saying to a friend yesterday that prior to 30 I was in pretty good health.

Anyway, since then, I have had several reasons to visit a GP or a consultant and perhaps its the case that my body has decided to take revenge for the years of abuse I have put it through. You would think my body would be grateful for all the fine foods, chocolates and cream cakes I have treated it to. I challenge anyone to point out a body that enjoys ice cream and milkshakes more than mine does!!!

Well all that has changed, I am not a picture of health but I am now of any age where I consider that if I am in McDonalds then perhaps the super size meal is not the best and I cant remember the last time I had a cream cake or shovelled a tub full of Phish Food (mmmmm....) down my gullet.

I am probably in a period where over the next few years, all the toxins that were once in place will slowly but surely disappear.

To keep in with the falling apart theme, I was at the doctors again yesterday with tender nuts!!! I instantly thought I had some kind of tumor so I got into my GP pretty handy. So after a good feel around my most private ginger bits, I have a course of antibiotics and a sample to wait on the results of.

Like I said, falling apart.........

Stop at square 1 and dont pass go!!!

Here are the details of my follow up with the consultant then.

Basically its a case of do nothing. I have no nerve damage, the condition does not debilitate me so it will either clear up very slowly over time or it could get worse or it may just stay as it is for the rest of my days.

I don't show too much emotion on this blog, I state a lot of what happens to me in a light hearted way and as matter of fact but I don't mind sharing one of my biggest fears.

Its hard to put to words but I will try. If indeed this is something that will stay with me then the small adjustments that I make in life enable me to go on without any signs of trouble. However, I have made small adjustments to compensate for lots of things.

I don't walk as fast or as far as this compensates for my balance problems.
I don't break into a run as this compensates for my balance.
I don't sing loudly as this creates a cold feeling in my face.
I don't drink anything like I could previously as this compensates for the lethargy I have the following day.
I don't do any heavy lifting as this compensates for any back trouble around my inflammation area.
And now, I constantly wiggle my hands and fingers as this compensates for the cold and numb feeling I get when they are at rest.

Lots of compensating and so hopefully you begin to understand my frustration at my condition.

I just don't want to be one of those people who is useless because "I cant do that because" or "I cant do that either". That is my deepest fear, I like people to rely on me and if I don't feel that people can then I don't see the point in very much else.

Is that all a little deep? Well, sometimes its good to get the dark side out, I feel better already for writing this!!!

Ouch!!! And back to square 1....

Well that was not pleasant.

Have I ever told you all that I hate needles? And yesterday at the hospital, I got the worst needle of my life!!! You are lucky I remained conscious.

I had my EMG which was fairly uncomfortable as the consultant measured from point to point on my arm and then sent an electric current through me to see how long the current took to go from point to point. The good news is, I am very conductive!!!

So there was nothing to show from the electrical pulses therefore he had to stick a couple of needles in the muscles on my right hand and have a good listen!!! I have never felt anything so awkward, and this is coming from a bloke who has had a Lumbar Puncture, the needles went in and I had to move the muscle so that the needles moved slightly......ooooowwwww!!!!!!

Anyway, nothing there either which means I don't have Ulnar Tunnel Syndrome and I don't have any trapped nerves. So....back to square one.

I have a follow up with the consultant tomorrow to consider what else it might be. Well, you have MRI'd me, removed spinal fluids, electrocuted me and inserted needles as awkwardly as possible.....what could he have lined up for me next I wonder?

Time for more tests....

Today I am having my nerves tested. This does not mean that I am being lined up to watch Everton win the European Cup or anything, I am going to Lourdes hospital in Liverpool to have whats known as an EMG (Electromyogram) test. Here is another useful link.

Basically electrical pulses are sent through me to measure how my muscles and nerves in my hands react in a number of different ways.

I am sorry I looked it up because it also involves NEEDLES being inserted into the hands too. Have I mentioned before that NEEDLES are my biggest fear in life? Kerris has come to the conclusion that a higher power is testing my resolve with NEEDLES to help me overcome my fear. I have come to the conclusion that Doctors and Consultants just see me as a pin cushion.

I have a follow up appointment with my Consultant booked for Thursday to review the results so as ever, I will keep you informed.

Some relieving news!!!

Finally, something to feel better about!!!

I returned from seeing the consultant this evening with my wish granted of re-assurance and the lifting of anxiety!!!

I mainly went to chat about the numbness I had been feeling in my hands, its driving me slightly mad (see previous entry) and my worry was that this was something permanent linked to my Myelitis.

Instantly, he re-assured me that he didn't feel it was linked and then he started poking me around, testing my reflex responses, testing my muscle strength in hands and generally prodding at my arms and hands with any sharp object he could lay his hands on.

The result? He believes I have trapped nerves in my elbows which are causing these symptoms and he wants me to take some tests (mainly electrocuting me) to confirm his suspicions.

If it is trapped nerves then I have what is known as Ulnar Tunnel Syndrome - here is a useful link - and if you take the time to read the page, the impressive thing is that it is exactly, almost word for word, how I described it to him. Impressive because I had no idea what my numbness would be caused by and Ulnar Tunnel Syndrome is a new one to me!!! So I am impressed with my ability to accurately describe symptoms!!!

Hopefully next week I can be electrocuted which is a test that measures my reaction to sharp objects by recording how long it takes for me to react. The longer it takes, the more chance I have of Ulnar Tunnel Syndrome.

If it is confirmed then a minor operation will follow rapidly and after being bruised and bandaged in the arm area for a few weeks I should be, as Nurse Nancy says in Jays' bedtime book, "Fit as a Fiddle".

I never thought I would look forward to having Ulnar Tunnel Syndrome but if its something other than the development of Myelitis then I am a happy bunny.

Oh, and how is this caused? Well the question was asked "Do you do any work where your elbows are raised or compressed for long periods of time?".

Well try 35000-40000 miles per year in my car for the last 6 years with elbows rested on solid armrests and doors!!!

It beggars belief as to why I never got it sooner!!!

Coiled Spring!!!

I think feeling anxious is a common side affect of any condition you have in life whether its a headache, toothache, severed limb or in my case, Myelitis.

All this week I felt like the proverbial coiled spring, I feel constantly on the edge and that I need my wits about me because at any given moment, something awful might happen.

I know why I feel this way right now and I think a fair percentage of it comes from booking to see my consultant this week. I have never quite shifted a light numbness in my hands and I want to know whether this is something that can be treated or whether its just going to be there as a gentle reminder that all is never going to be completely normal ever again!!!

I think once I have an answer, my anxiety will lift.

There are other factors too which I talked over with Kerris who has been her usual exceptionally understanding self in these matters. I don't want to go into them on here for a number of reasons. These are just too personal to share and also there are things going on in the background that I don't want to share with the world just yet.

Its a strange feeling seeing the consultant when there isn't anything medically wrong. I think I just need some re-assurance at the moment. Usually I am there saying that I cant do this job because I cant keep my balance or I cant feel what I am touching. So to sit there and say "well actually, I was on site in Sheffield yesterday reconnecting the minutia of a failed security system that had been sabotaged and I am damn proud of the fact that I got it working again" to be followed by "but this numbness has never left me and although it affects me in no way, its starting to drive me insane" seems like I am just attention seeking.

Well the fact is, I have private medical in my job with Bupa and as long as the funds are there to allow me to do this, its part of my work package so I am going to use it.

It goes without saying that there will be an update on Friday after I have seen the consultant.