My health has always been wonderfully iffy to put it mildly, before my diagnosis I read and read, trying to find out what was wrong, there were so many illnesses that it could have been, that I found I had every illness I had heard of and many I hadn’t, clearly that wasn’t the case, but I was aware that MS is far from the only illness that causes not just cognitive problems, but other brain damage as well, so when the other day I was asked by a friend on Twitter to tag some of my posts with #BrainTumourThursday, I wasn’t in anyway surprised, honored yes, surprised no.

There are so many things that I have spoken about in these pages that are relevant to many different illnesses and as I am not medically trained, my descriptions are those of a person who is living through and with, the same things as many many others. To any of you reading for the first time I hope you find what I write interesting and hopeful a little helpful too.

I at last, last night took my first increased dose of Oxycontin. Adam went to the Chemist after work and I felt like a kid waiting for Christmas, I was so looking forward to having the pain reduced. I knew before I took it that it will take a few day to start truly reducing it, not because it is a build up med but because I know that to try and ease my pain I have been walking and sitting in odd positions a lot. The incorrect posture has caused pain in other places, so once I have the MS pain reduced I can hopefully rectify. 45mg dose I hope is going to be enough, as agreed with my GP this is on test and I have to be open to the fact it might not be enough. All evening I actually felt the pain was lessened slightly but I had as I said somehow got this stupid excitement and as usual when your expectations are high, the result is always questionable. I slept well and this morning I actually did manage to get out of bed with less pain than I have been living with for months. Tablet 2 this morning and again I think there is less pain in my legs, they are still painful, it’s not like they are suddenly perfect but there is a reduction. Another one of those waiting things, waiting this time to see the full effect.

I of course since the request have spent time thinking about what to me has been the hardest issue caused by lesions on my brain, like so many other things in life the worst is always the one that is there at that second. At least the good point is you forget things quickly, lol. The most terrifying experiences happened a few years ago when I founding myself lost in places I knew, sounds silly unless you have been there, but since housebound lucky that hasn’t been a problem. Now, well finding words and putting them together, then actually getting them out of my mouth is probably the most annoying. Even getting them from my finger tips is an issue at this second, but I get there. It isn’t an easy life but I have worked on building a happy one and it is something that I really believe is achievable by everyone.

So welcome to anyone who is here for the first time, appropriately I am working today from with in a fog and with a memory that is struggling. Today is short and hopefully sweet, you can leave comments or contact me through twitter, I try to answer question when I can and I am always glad to here from my readers.

Help for others

Last night I found myself on line at a time of day that I usually spend with Adam, he had come home form work then gone to the chemist with my prescription which had arrived that afternoon. Unfortunately the Oxycontin wasn’t in stock so he will be picking that up this evening, so another day of not knowing how to sit stand or move. When he came home I unpacked all the meds, two carrier bags full, they were all sat on the kitchen unit looking like a weeks shopping, rather than the medications by one person just to get thorough life. During the winter we spend more time together than in the summer, understandably he likes to go out on his bike a couple of times a week, partly for the exercise and partly because he enjoys it. Other than that the exercise he enjoys is working out in the kitchen with his weights, that was his plan for the evening so he set about unpacking his bench, weights and accompanying regalia. I knew it would be at least an hour before I saw him again so I booted up my PC.

I found a desperate sounding message from a lady who doesn’t have MS but is chronically ill, I felt helpless and couldn’t think of a way to help her at first. When a close friend spills out how they feel, it is easy to answer as you know how they think and how to trigger the questions that make them start to think there is a way out, but someone who is a total stranger made me scared that I might push the wrong button rather than any of the right one, but I couldn’t do nothing either. I made a decision that all I could do was give some of the advise that is here in the pages of my blog, but bite sized. I found myself writing one line that I don’t know where it came from but after thinking about it, it felt right. I normally would say learn everything about your own illness and get to know it, but this time it came out as learn to love your illness. It is a sort of knowledge that is love, it’s like the loving your neighbor, you have to live with the thing you like about them and the things you hate. You learn what upsets them and what they like, what makes them happy and what makes them angry. There is a strange emotional bond to an illness and in many ways I think that is how you learn to accept and even to a degree love it.

This morning as soon as my PC was ready I went straight to the Twitter DM from the night before and I was delighted to find she was fine, in fact really quite bright, so my words and worry wasn’t wasted. The more I am writing and publicising my work, the more I am being asked for advise, I guess all I can do is what I did last night, read their words and answer from my heart.

The medication quandary

MS Meds

Medication is almost as difficult at times to handle as they illness is so I agree totally with the title to the above picture. Although I constantly say you have to listen to your body I do when it comes to medication find myself waiting, just as it took me several weeks of increased pain to call my GP yesterday and discuss again the options. The only med open to me now that can be increased is the Oxycontin, I have been on it for several years now and I am taking 30mg twice a day. I like many started a 10mg and it has increased as time has passed and for me I have had no side effects and no problems of any kind that I am aware of, so increasing the dose on the surface should seem like an easy decision to take, but it as most things, just not that simple. Like all opiates your body becomes tolerant to the drug and the dose has to keep going up and up, I had to think long and hard about going on to it in the first place as I knew the first step meant I we boarding a train with no brakes.

What is happening at this very second is what I worried about before starting, the level of pain in my legs now, is not far off as bad as it was before the first dose of Oxycontin, I know my future will always be stepping up the level as required but I don’t want to do this too quickly as I like being awake and with it. My GP wanted to put me straight up to 60mg but I asked him to let me try a smaller increase first, we agreed on just going to 45mg first. The conversation went back and forth and I got the impression he didn’t think it was worth trying the smaller step and that I would be back in weeks, he may be right but I want to try and that is what is now happening. I can see his point, when I said yes years ago, I knew then the path ahead so why keep fighting it, just take them and enjoy the drop in pain. I was brought up in a world were the family GP was god, you did as he said, after all he is the all knowing being of medical knowledge, so to me just suggesting a different route of treatment is still an alien concept.

Stopping opiates is horrendous, but he once again tried to reassure me that it was something that I wouldn’t need to worry about, as there was little chance of my needing to stop them. I know he is right but it isn’t that, that worries me, it really is increasing the dose quicker and higher than is needed. I suppose I always have in the back of my mind the picture of the zonked out junky, somewhere I don’t want to go. Right now I am waiting for the prescription to arrive through the post, I can’t simply snap a table I have and take the bits as they are slow release, breaking them would result in instant release. Fingers crossed I will have them for Thursday night or Friday at the latest, then I will be able to feel the result myself.

Listen for a while to any Twitter conversation on MS and you will eventually hear the discussion of what meds are being taken by who and what the effects are. I am unconvinced of the value of these conversations, my personal experience of suggesting a new medication or a different one from those prescribed, has constantly been that will not help you, it isn’t suitable for your MS, but as I belong in the tiny 5% sector of MS sufferers with Progressive Relapsing MS, that may be why. Although I know longer see GP’s as gods, I do still have a big enough respect for them to accept within reason their knowledge. You or I can read as many leaflets, web pages and have as many conversations as we like, eventually it is the Doctor who still has the power to make those decisions. I’m proud at the minute I had the guts to get what I wanted, it’s a big step confronting a demi-god.

The scales tilt

Over the last few weeks I have been suffering with increased pain in my arms and legs, I think I have mentioned it several times in recently but I keep putting off calling the Doctor as I really wasn’t keen on upping any of my meds really. It looks as though I am going to have to give in and make that call. The whole of the weekend and again this morning the pain is just silly, I can find no relief when either sitting lying down or standing and I know my left foot has dropped a little more, which does of course mean that I am now putting the incorrect weight on all my other leg joints and muscles, in time they will also hurt. I am not sure but it seems as thought big changes are happening. I know the heat of the last few days hasn’t helped, but this has been going on longer than that. I am finding that I have to keep moving even when sitting, the pain in my lower leg is the worst area and I can relieve it a little by moving slightly, but it just triggers another to replace it. Waist down things have slowly over the last few months started to all go wrong. Progression again, just the way life is.

I used to fear losing my eyesight more than anything else until yesterday. I woke from my afternoon sleep and the pain made it really hard to get out of bed, far more than it usually is. It hit me then that everything I have done to manage my illness, wouldn’t help me if I couldn’t walk at all. I live in a Victorian Tenement flat, not in any way wheelchair friendly, if my arms hold out well yes, I could use crutches, but they would only be of use to help me to the toilet, bed or computer, I couldn’t carry a mug of coffee, if I needed them full time I can’t see how I would manage by myself. There are still problems a head, I always knew that, but with little money, the solutions are complex. Clearly it is time for me to start working on the next phase and to look for the solutions that suit me best.

The first thing I need to do though is sort out better pain control, once I am not spending all my energy trying to live with it I should have enough left to see what my future options are. This is the constant life with a progressive condition, as soon as you think things are just ticking over the balance slips and your back to solution searching.

Finding the path to content.

There are days when the world seems a bigger and brighter place. No I’m not trying to be sweet or cutesy, but those days when for no reason there is a general good feeling about the new day. Being ill doesn’t mean you have to be depressed and or depressive. I can see how some people get drawn down and find themselves drowning in pain, grief and self pity, I am not saying any of that in a nasty way, just as a fact. I like all others, went through spells of all those feelings before I found my own understanding of my illness. I really think it is unfortunate that there is no way of stopping people from reading everything they can about what they believe their illness is until you have a full diagnosis, naturally we all would have questions, but all that is achieved by reading, is panic and fear. Once you have a name and a basic understanding from the doctors, then is the time to start learning, you can them find the facts without mentally adding in thing that are not relevant.

I am not sure when my attitude changed towards having MS and accepting it, acceptance is vital, until I accepted what I had, and what was ahead I couldn’t move forward with the rest of my life. I think that acceptance started when I gave in and started using my wheelchair. When sat in it there was no way of denying I was ill to myself or any that saw me. That along with the report from the psychiatrist that there was clear cognitive problems and damage to my frontal lobe, pushed me to start find the way through it all. Working with my MS rather than against it, I suddenly found that it actually wasn’t the end of life and I just had to put in the effort needed to plan out how to deal with what I couldn’t now escape.

I know it sounds odd to others but I have to say becoming housebound in a way was a blessing. Without the pressure and stress of the outside world I found peace, a peace I didn’t realise I needed. The space, calmness and quite, has brought out a less stressed and nicer person, without other people pushing and demanding things of me, I can actually be me. To anyone reading this I would actual recommend that if they have holiday time available to take two weeks, to just stay at home, I do mean at home no shopping, going to friends, just stay at home. It is more relaxing than any holiday abroad or anywhere else. Tell everyone you are abroad, so there are no phone calls or internet contact, make your home a retreat and relax.

I don’t like the word content, as that sounds to simple and wishy-washy but there isn’t another word for it. Today the world looks a brighter place, because I am content.