UNEXPECTED CHANGES

Life is full of surprises.  Five or six weeks ago I thought my future was very bleak.  The winter had been very hard on me with regard to pain and my disease has progressed quite a lot in the last year.  I thought that my quality of life was becoming poor and I could not see how I could show my dogs.  I have always said that once I got to the point that the quality of my life was such that each day was a chore, it would be time for me to opt out.

I had a chance conversation with a person in Tesco’s who was taking the drug gabapentin which helps them with their spinal cord damage.  As I have the same problems it stayed in my mind.

A few days later I made an appointment to see my doctor because I had reached the end of my rope and I asked her about this drug gabapentin.  Elizabeth smiled at me and just said “what a good idea”!

I am completely astonished at the difference it has made.  From the very first dose I slept for six hours without waking up.  I have slept well most nights since.  I have not slept like this for years because of pain. I would wake every hour and have to get out of bed or just change my position which was difficult.  Often I slept sitting up in bed or sitting on the recliner armchair downstairs.  The drug does not sedate me. What it does is acts as a nerve block. Therefore I am not in pain whilst asleep.

I had been with out good sleep for so long that I had not really realised the effect that it has on me.  I am not such a grumpy sod after all!  My good mood and sunny disposition is my natural self not the result of drugs making me high which is what I thought at first.

Other people have also commented on how well I look how I have colour in my face and how I do not look pitched and in pain.  This pleases me although at the same time I am really surprised because I thought I covered well.

This is not a miracle cure. I have learned that even with good pain relief I am still affected with fatigue from doing the same activities.I may not be feeling the pain as strongly but it still has its affect on my body.  It also has done nothing for my balance nor has it taken away the need to use walking sticks or my wheelchair.

I went to a major show on Sunday for the first time since last July.  I really enjoyed myself and had forgotten just how much I enjoyed these events.  Because John was with me I was able to use my wheelchair and I spent most of my time sitting in that apart from when I was in the ring and because of my tablets I felt pretty good.  However I started to have serious problems with my gut by the late afternoon.  When I awoke the following day I was extremely tired and my gut was the worst it has been for a long time.  So what I now know is that the stress on my body has to express itself somehow!  Fortunately one of my medications will stop the gut spasms so that I will not have my dog show days ruined.

However I am extremely pleased with my current situation.

I am also very pleased that I finally have a vehicle that is suitable for me.  I know that it would appear to be sensible that a disabled person would understand what their needs are but in fact I have learned this but slowly.  The car which I have been driving for the last year, and the previous car, were not at all suitable for somebody with my difficulties.  I have to say that none of these things crossed my mind.

I did not realise that if I drove a a car with an automatic transmission it would be much less wear and tear on me.  I also did not know that I could have a wheelchair Crane fitted into the back of a car with a suitable opening.

If you read my blog yesterday you will know that I now have a fully automatic Ford Galaxy a seven seater MPV.  It has a crane in the back and what looks like a remote control which I used to get it to lift my wheelchair up move it out and down onto the ground and vice versa.  The freedom this gives me is thrilling.

One of the things I find so exciting about life and keeps me interested is that there is always something new to learn.  I have learned a lot about my needs recently and also about my personality.

There is a man who I meet a few times a week at the swimming pool. He is more agile and mobile then I am and he goes there to swim every day. He is 90 years old!.  I fully intend to be doing my swimming when I am that age.

I prefer to swim along the edge of the pool so that when and if I have spasms I can easily grab hold of the wall because I would be able to do that more quickly than a lifeguard would notice I was in trouble. The thing that surprises me is that when I get in to the pool if that lane is occupied by another swimmer they nearly always move to allow me to use it.  I have never asked anybody to do so and I would not dream of doing so.  I am touched by their kindness.  Even this 90 year old man moves for me.

Give yourself a Gold Star if you read this far! xoxo

SUNSHINEY DAY

Pussy has decided to lay next to me and watch me write my blog.  She is so like her mother.  She has decided that she belongs to me and that is that.

It looks like it is going to be another warm day as it was yesterday although at the moment I still feel chilled as I almost always do when I wake up in the morning.  I have no idea why but when I awake no matter what the weather and even with the heating on in the winter I am cold when I wake up. If you could feel my hands right now!

I slept in the recliner last night because of my hips but I did sleep for seven hours without waking or at least if I did wake I do not recall it.

I am going to photograph my finished sweater.  I am rather pleased with it ,especially the neck.

I am astonished at the amount of people that cannot take any form of disagreement.  There is this unfounded unproven and completely nonsense story going around about the sweetener aspartame and how it causes multiple sclerosis and all sorts of horrible diseases. I have been sent this by people who believe that I am probably ill because I drink diet Pepsi!!! Anyway, a “friend” posted this story on Facebook and I said that I had seen this story many times and it really is unproven.  I also pointed out that I have been sick for very many years but it is only the last four years that I have taken to drinking drinks that are sweetened with aspartame or sucralose.  Prior to that I only drank water coffee and tea.  I am very pleased that I now have more options.  I eat jelly every day. It really enables me to deal with the fact that there are so many foods that I cannot eat.  I actually prefer the taste of artificial sweetener and I find that sugar is far too sweet.  Apart from which sugar is one of the foods that my body cannot handle well.  The story going around about aspartame and Donald Rumsfeld is a stupid as the idea that microwaved food is dangerous! Back to the point; this “friend” who sees himself as a spiritual person, de-friended me for writing the comment. Then another person did the same just because I said that my experience of a different cult was very much the same as his!

As usual I am still finding it difficult to pace myself. The new drug, gabapentin,  that I have added to my painkilling arsenal does appear to work really well. However, I have not figured out the correct dosage yet nor the timing of them.I also have become very aware that whilst I may be relieved of pain enough to be able to do what I want, it does not prevent the wearer tear and therefore I still become fatigued. Bummer! For me that is the worst part of this bloody disease, the fatigue. It really frustrates me because it prevents me doing what I want.

Good weather days like this are really nice. I have the patio doors wide open and both gardens open and the dogs can just go in or out as they please. Dogs are really sensible I’m like us because when it gets to a certain level of warmth, they come in and lay on the tiled kitchen floor.  I do sit out in the sun but I can never do it for very long, 30 min at the most.  I do not understand how people can sunbathe.  Apart from the fact that it is bad for ones skin, it is also incredibly boring.  This is why when John and I go away we tour cities and countryside and visit galleries and museums and old buildings etc. The idea of spending two weeks on beach is anathema to the pair of us.

The puppies are quite funny.  Two of them have decided it is naptime but the others do not agree and so they are annoying the two trying to nap! Winston is doing his best to attract my attention and get on my lap.

THE GOOD LIFE

I have experienced quite a lot of frustration recently.  John is a man who is not good at talking about his feelings or what is going on.  This leaves me frustrated and having to guess.  You can imagine that my guesses are usually more than worrisome!

I wrote him an e-mail in the hope that he might write that and be more forthcoming.  It worked and I feel very much relieved.  He said that he did not want me to worry which is why he keep quiet about things because he thinks I have got enough on my plate with my disease!

He now understands that what worries me is being kept in the dark.  He retires a year from now and I really need to know what our options are and what he plans on doing. I now know.

The dogs are a delight.  Pussy, Plenty, and Fin are 12 1/2 weeks old now. They are just about crate trained.  They have the most wonderful temperaments.  I am extremely pleased with them.  I am also extremely pleased with their mother Whitney.  The has produced puppies of excellent quality and I think at this moment in time, better than herself.  This is what one hopes for when breeding a litter.  To have a champion that produces well is the hope of dog breeders.

I have been enjoying crocheting.  I have crocheted and scarf / wrap for my friend Dawn and I am now crocheting another for my friend Gail. I am also using crocheting on a sweater that I have knitted. I have crocheted the neckband the cuffs and the hem.

I am doing much better physically.  The gabapentin has made a big difference.  It is not a hundred percent perfect of course. I am very pleased though but I have now added this to my arsenal.

With any luck I ought to be getting a new vehicle this week.  I am getting a Ford Galaxy with automatic transmission.  It will also have a wheelchair lift in the back.  I am sad to be parting with the Ford Mondeo but it really is not suitable for me and never has been.  You would think that as I am a disabled person I would understand my needs and therefore would have bought a suitable car in the first place.  It is not that simple.  Yet another example of how what we think and believe affects our lives.  It did not occur to me to get an automatic.  I did not think that a car like a Galaxy would be easier for me to get in and out of and would also have been enough room for my wheelchair and everything else.  This time I am sure that I have the right vehicle for my needs.

The government cuts and their attitude to the long-term sick and disabled is rather worrying.  I have read up on the information available on the Internet directly from the government.  It was only help to a certain extent but the information I read contradicted itself it said one thing at the beginning and then changed its mind halfway through! Whilst I think I will be okay in this regard, it is still a worry I could do without.

I have a championship show to attend on Sunday. It is the Midland Lhasa Apso Association. Then on May 1, the show season really starts.  I am obviously looking forward to it but at the same time I have some trepidation because I have not done this since July last year and I am physically worse that I was a year ago.  However, I will deal with it and this new drug gabapentin will really be put to the test!

HAPPY CHAPPY

Typically for me, I have been a bit concerned recently about how good I feel! I have been worried that the morphine and the gabapentin were altering my mood.

I did not take any last night nor did I take any this morning. Yet, once I was up I was talking to the dogs and generally feeling quite chirpy. I went to my swim which went very well and I sang in the car on the way home and I have been playing silly buggers with the dogs.

Clearly, I am just in my normal mood! This is my normal optimistic self. I am so used to feeling grumpy and exhausted and sore that I had forgotten that this was not my normal mood.

I am astonished just now strong the negative effects of not sleeping well are. I got so used to it and if I slept for three hours without waking I thought it was a good night.

My balance is not any better as proven to me yet again this morning. As I approached the poolside my balance went. I grabbed hold of the rail of the disabled person’s staircase into the pool and it moved and if it were not for the quick thinking of the lifeguard I would have fallen backwards and possibly smashed my head on the metal railings. Losing my balance is rather weird because it most often happens when I am stood still as I was this morning. It is like my balance just suddenly switches off.

I have also found that whilst I can do things more easily I still have the fatigue effects of activity even if I don’t have the associated pain. Getting dressed or undressed is not any easier so I avoid doing it!

I am so lucky to be living at this time with these drugs available. Before the likes of tramadol and gabapentin I would have just been on ever larger amounts of morphine and suffered all of its associated problems. Thank goodness for pharmacology!

I have also to sing the praises of my GP. Not only is she a very kind and caring person, but she is a palliative care expert. She has special qualifications in pain relief and regularly updates her knowledge by attending conferences. She therefore knows the best way of helping me.

I am realistic in that I have always known that no drug will have the effect of completely removing my problems. They reduce the severity of pain but they do not kill it completely. They also do not enable me to move as if I do not have a problem. It is not a good idea that anybody expect too much from medication.

The same applies to my heart. The three drugs I take for it work well in reducing the risks of my CHD but they do not cure it.

I know that there are other 24/7 pain sufferers who read this blog. Perhaps what I have written about the drugs will be helpful. What also helps me tremendously is my attitude. I am always aware that things could be very much worse for me. I know of other people who are worse than me. I also see others who are worse than me.

I live within the day only. I may plan for the future, like for example our trip to Paris at the end of May, but I do not allow my mind to live in the future or in the past. The only time I have to worry about is right now, this day, between waking and sleeping. Taking life in small doses is much easier to handle.

I certainly do not think about the progression of my disease but I also do not ignore it. I am not pretending that my disease is not progressive and that I will not get worse. What I am doing is not dwelling upon it. I cannot know the exact effects nor the exact timetable. If I think about the future in this regard all I am going to do is frighten myself. Instead I concentrate on now and all the good things in my life.

This may not apply to other 24/7 pain sufferers, but one of the reasons I find my physical problems so easy to deal with is that I am no longer in the psychic agony that I lived with for most of my life. I have found that physical pain is so much easier to deal with than emotional and spiritual pain.

Sometimes, pain in my body will make me yell because it is suddenly severe but most of the time it is background noise. I don’t really know how else to describe it. Sometimes that background noise is just loud enough to be heard and at other times it is like rap music being played at full volume. The most important thing to understand is that it is constant. There is no time off for good behaviour!

If you have ever exercised and afterwards your muscles have felt very sore and your joints have creaked, multiply that, and imagine it 24 hours a day, seven days a week, 52 weeks of the year.

So for you non-pain sufferers who read this, perhaps it will help you understand how those of us afflicted don’t always think clearly and are often not on an even keel emotionally. Therefore, we can react more strongly than is called for. In other words, we are more easily upset and more quick to anger. In simpler terms, I can be a grumpy overemotional bastard!

I am what I am!

ROCK BOTTOM

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.