I am one of these people that really will not give in until I hit rock bottom.Thus I suffered a great deal of physical pain for a number of years before I even broached the subject with my Doctor. I took no steps to ease it. This culminated in me being stranded in Stockholm Sweden in so much pain that I was barely able to move and John had to fly out to rescue me.
Since then I have used walking sticks to walk. I persevered with that until I gave in yet again and got a wheelchair because I realised that my life had become very limited. Fairly soon the manual wheelchair became too much for me to handle and I absolutely HATE being pushed.
Two years ago, (or is it nearly three?), I bought an electric wheelchair. The freedom this gave me is not one I would give up lightly. It enables me to travel and sightsee and just to do ordinary mundane things like go to the supermarket.
Over the last few months my pain has been increasingly prominent to the point that even taking large doses of morphine was not doing away with it. Let me rephrase that; pain killers do not end pain what they do is dial the pain down enough so that one can still have a good quality of life.
The Friday before last I was speaking with the manager of Tesco’s who is a really nice woman. She takes a drug called Gabapentin, as well as tramadol and morphine. I think she has endometriosis. Anyway, when she mentioned the Gabapentin I vaguely remembered that the neurologist that I saw six years ago mentioned this drug. I refused to even consider it because it is a drug for epilepsy and I had been on carbamazepine before and absolutely hated it because it felt like I was living in a bubble. It numbed me too much. I was on it for mood control not for pain control. This was many years ago.
Now my pain had been so bad recently that I really began to think that I would not be able to show my dogs and I had started to think that my quality-of-life was such that I really didn’t want it.
I made an appointment to see Elizabeth and the first thing she said when she saw me was “oh dear, you’re having a bad time.” I asked her about the Gabapentin. She immediately smiled and said “what good idea.” She reassured me regarding side-effects and said I could start on the lowest dose which is what I have done.
It has made an enormous difference. I have only been on it for six nights and for each of those nights I have slept for six hours without waking up. Not because it has a sedative effect but because of its nerve blocking properties. That pain is not waking me up. I still have to take the tramadol and paracetamol and morphine but not as much and I am feeling so much better.
I am frightened of medication because I have had some serious side-effects from drugs, one of which nearly killed me. I had been given a prescription for tramadol and it was two years before I took it! When I was given the morphine I took it straight away but I went next door to my neighbour who is a nurse and took it with her and then sat with her for an hour. It immediately dealt with my pain and the only side effect I had was my face flushed. Previously, the drugs have made me feel completely panic stricken and I have had hallucinations. They have made my skin crawl. It is hard to describe just how dreadful some drugs have made me feel.
The good thing about Gabapentin is that I can work up to 3 g a day if I need to. My disease is progressive so drug intake will always increase not decrease.
I am very fortunate that I have these problems now because even 30 years ago there was not the treatments that are now available.
I am unable to take anti-inflammatories the because of my heart problems.
There is no point me promising myself or anybody else that I will not wait until the bitter end before I give in and ask for help. My track record in that department speaks for itself.
It is not a completely negative trait because it is this stubbornness that keeps me enjoying my life day-to-day and planning for the future. I am an optimist most of the time. I enjoy each day and deal with each day one day at a time. I do have to to make myself get on with things. I am so lucky that I have my dogs because they are completely dependent upon me for their welfare so I cannot lay in bed feeling sorry for myself no matter how much pain I am in or how tired I feel.
To be honest it is not totally stubbornness on my part. I was brought up to believe that only sissies moaned about pain and took medication. Although I know that that is totally ridiculous, and that my father was a complete dickhead, it is not so easy to wipe that particular tape.
There is a downside as well as an upside to every decision that we make. I have found that many people will not accept this fact. Even with the good things in life there are downsides. One of the most fundamental things that people do not understand is that the more security we have the less freedom we have and the more freedom we have the less security we have. You cannot be totally free and totally secure.