Stepping over the blue line

This morning I actually got success in phoning the OT department when wrote to me exactly 3 months ago saying I was on their list and would be seen as soon as possible. It seemed to take her a while to find me on her system and when she did she said that it normally takes between 6 and 7 months to see someone in my position. I know that they deal with people who aren’t just chronically ill but dieing, but on the system of those who are worst off, without any assessment of those they set as an appointment sometime in the future, I will never get to the top of it. She read to me what was listed as the reason I needed to see an OT was simply due to my MS and Fibro, no mention that I can’t sit without constant extreme pain. It will be clear form what I have written in the past few months that the pain in my legs and backside is truly extreme, and that it is not through lack of trying to deal with it and I have done everything that I can to find a solutions. At the minute my back is adding to this but it is now almost as it was before, but what has happened is that the pain in my pelvis has been made worse by it. I am tempted to call the Doctor and source more painkillers but as I have said before I am not keen to go continually down the line of more and more meds.

None of the things that we have to rely on the NHS for here in the UK is as smooth and as fast as we might like and if it is sometimes hard to keep saying to yourself they are doing what they can, at times you want to scream at them do more and do it now! What I don’t understand is why I can’t have a med regime that allows me to have pain control during the day at a level I can function and higher relief in the evening when I am tiered and can’t deal with it. I have asked several times if I can have some sort of boost which I can take when it is at it’s worst, not everyday at the same time. I can really feel that your illness has to fit what they do, or they can’t help you. I think I am old enough and wise enough to know myself when and when not I need something to deal with my pain. Why is it so hard for them to understand that? I really do understand why so many resort to the illegal route if cannabis, if it works for them well it is their choice to take the risk of being prosecuted for it. I have a real dilemma when it comes to cannabis, firstly I really don’t agree with breaking the law. I have through out my Adult life had great difficulty doing anything that is illegal, and on the odd occasions I have knowingly stepped that line I have felt terrible about doing it. At a party when I was in my late twenties I tried cannabis, I only took two or three draws and it simply put me to sleep, not something I really want and the guilt I felt the next day made that sleep of no use what so ever. It has been suggested to me many times that I should try it again but no matter how bad the pain is I couldn’t deal with the knowledge is was illegal. Yet here I am an adult who isn’t allowed to have the pain relief that I need when I need it, so yes I do see why others might take the risk, but it is not for me.

Independent thinking

Some of you may have noticed I don’t fill my posts with links to other blogs of even to medical sites, I do this on purpose and it has a simple reason behind it, I no longer read other blogs that are about MS. That may surprise some of you but I have done it on purpose, it was a conscious decision as it is all to easy to allow others individual impressions affect your own. I wanted and have tried hard to maintain this blog as my journey, (I hate that word but it is so hard to avoid) and the discoveries and problems I encounter. When I was first diagnosed I read everything and anything that I could find and on occasion found a person who I connected with and who was writing what I felt, but with all of them there were things I couldn’t agree with, just as there will be in here for many of you who follow my daily ramblings. I equally found medical sites cold and to simplified to provide a voice for my MS, everyone’s MS is different and that is a medical fact, therefore so is the voice that accompanies it, I am luck, I can give mine a voice and a place to be heard, not everyone can. When someone suggest that I read something I politely change the subject and move on but as I am human what they have said, will enter my mind and I will think about it.

I don’t know how many of you what ‘Hollyoaks’, but they are using a story line just now that is making my just a little angry. To set the picture the story is following a teenager who has been duped into having a cannabis farm in the attic of his families home. One of his friends fathers has MS badly, although I don’t think we have seen him for over a year now, he went into hospital never to return, but his son is using his father health as a cover story to protect his friends from the others in their group. The story line angers me for several reasons but the main one is due to the issue of cannabis being constantly linked to MS. Although all medical tests have returned no real evidence to support the belief that cannabis helps with the MS symptoms, I am sure it probably does, but what always annoys me is the now common assumption that because I have MS I smoke cannabis. I don’t. I tried it as a teenager, as most do, but I have never touched it since and I never want to, as it is illegal. It might work but I don’t want to find out, I wouldn’t ask my husband to get a criminal record because of me, I will take anything that my Doctors give me but that is all.

I have nothing but praise for Hollyoaks writers, who wrote an excellent story line on the impact of a parents MS on a teenage carer, but just as the blogs I read, the fathers MS wasn’t the voice of mine. TV has tried, many times and I have watched many of them but I have to try hard not to get angry a lot of the time, as they all seem to be doom and gloom stories. I am glad that it is now a story line included in many different programs and awareness is raised, but I am angered constantly by the image TV insists on portraying of a person incapable of any independence, smoking cannabis and falling over every two seconds. Hallo TV world, there are loads of us out here, not just me who are aware of our futures but still living to the fullest extent and still happy to do so, oh and don’t smoke cannabis.