Tuesday, August 20, 2013


Times are very strange at the moment for me.  emotionally I seem to be all over the place. And my body is worse than it ever has been.

I have had to accept the fact that I can no longer do long-distance driving. I must have someone to share the driving with me or to do the driving completely.

The last two longest and shows I have attended I was driven both to and from entirely by somebody else. I therefore did not expect that I would feel terrible next day. In fact I have felt worse! Very much worse.

This I know is not anything to do with the long-distance driving and the dog show about to do with my disease because recently John and I attended a barbecue with some friends who live about 90 miles away. All I did was drive their did some chitchat and drove home. It was easy and a very nice day. The following morning I could not even get out of bed with the help of the electric bed and with John. I eventually was able to get out of bed at 6 PM with John holding me up even though I was using both walking sticks.

My doctor is arranging for me to see a psychotherapist who specialises in people  with diseases that are progressive and caused 24 seven pain.


 Well, as much as I thought that I had been dealing with my disease very well for the last nine years in fact all I've been doing is ignoring it and using my drugs to enable me to do what I want to do. I'm not quite so daft as to believe that I had made myself well in manner but I was daft enough to believe that if I took the drugs I could behave as if I was not ill and  and get on with life as normal. I have found out that this is certainly not true.  At least that is the case now as my disease has progressed.

 I know that I will come to terms that this and I'm so very lucky that there are people around me who are also thinking of ways to make my life physically easier.

I had at least become accepting of the drugs that the doctor gives me.   I no longer feel that I'm going to turn into some addicted maniac who it's going to start robbing people and bashing people over the head in the street for their wallets. She explained to me in very clear terms that there is no avoiding becoming addicted to morphine. It is my body that has become addicted to it not me. I recently put myself through a self-imposed ban on taking morphine. I did feel pretty awful and then quite suddenly on the fourth day I develop severe stomach cramps and vary bad diarrhoea. I did not eat because food was the last thing that I wanted and yet the terrible diarrhoea continued along with the cramps. I restarted taking the morphine because I knew enough about morphine  and withdrawal  to know that things were about to get very serious indeed. In fact I very lucky because I am prescribed 2400 mg of gabapentin every day which is a antiepileptic which also has other neuropathic uses. Had I not been taking those drugs I might well have been experiencing seizures long before I got to the cramps or after I got to the cramps am not sure.

Now I take my pills and I just accept that I have to. I no longer feel guilty for taking drugs. I no longer feel like I am a week person who is just the legal prescribed addict. It was a couple of consultations ago that the penny dropped with my doctor about what the problem with me was and my pills. I was not really ordering them enough if I were taking the correct dosages. It came to her of her own volition what my concern was and we spoke about it. I know that elsewhere in my writings I have completely contradicted myself in what I have written here but I believe it has all been part of my denial.

I have very much been enjoying my dog shows and have been successful. I am especially pleased that Mary Grace has now won the limit bitch class VI times and has two RCC. she needs 3 CC  to be a champion and I feel more and more confident that she will become so.

Megan has done very well for herself having one firsts and Best Puppy . Alexander has had 1sts and a Best Puppy in Show.(this is where my stubbornness comes in and my frustration; I have written most of this using my voice to type recognition software but some of it I have typed by hand. What I have typed by hand has had to be corrected as it was mainly gobbledygook. yet I still whenever I approach my computer go immediately to the keyboard with my fingers and sometimes I am so stubborn I will sit there and go through the  laborious correction myself.)

So whilst life it's good and I enjoy my dog shows I do need to speak to a professional long-term disease person because I am not dealing with this as well as I thought.

One thing that my doctor has prescribed is double sleeping pills because she wants me to have seven nights of solid sleep and then do the same thing every third night. She says it is a regime that they have followed with other patients and it has worked for them. Much of the worsening of my problems is due to lack of sleep particularly my neurological disorder.  I drop things constantly and I have been finding knitting very difficult indeed recently and for one week I just wasn't able to do it which really did frighten me.

I think this is going to take some time to work out but I also think that I will carry on doing my best and living as best as I can rather than just sit back in my seat and give up.


Biki Honko said...

Its so hard to adapt to life that is slowly eroding the things you love to do. Using meds to be able to live a normal life I think is quite common as well, only to suffer for it the next day or several days or week....

I hope you receive help from your new therapist, any little tricks and hints can make a world of difference to the quality of life.

You couldn't knit? How terrible! Life without knitting is not much of a life is it?

At one point I too was bed ridden, with 4 smallish children to care for. Luckily however I recovered, and for the most part am 100% operational, I still tired more easily than the usual person, but thats ok. Turns out my issue was massive food allergies that were slowly killing me.

Doll Creelman-Migliaccio said...

Looking at life head on can be difficult. I applaud your courage!

TeriKnits said...

Oh Colin... after reading this one I feel so compelled to send a PM to you. You have hit on so many similar areas that our son is going through. It is interesting that he was recently prescribed the Gabapentin that you speak of. We are hoping it will fill in the gap where narcotics and other meds leave off. It is encouraging to hear that it is helping someone we know (online at least!) that is having to endure so much pain. As much as I hate to bother you, I feel a personal message coming your way shortly ;-)....

PS These "two word" codes that we must duplicate at the bottom of each post are starting to get harder and harder!!!