7. Adapting to adaptions

It's been a few weeks since I last wrote to you, and a fair bit has happened in that time. 

Firstly, I've had a hoist delivered, which enables the carers to lift me up off the bed each morning, so I'm no longer bedridden. They take me from the bed to my riser/recliner chair, and once I'm in that, I can rise myself so that I'm standing, which enables me to get into my mobility scooter, thus enabling me to go around the town again and cause carnage!

I've also been given a hospital style bed. It means I had to get rid of the double, but that's a small price to pay when you bare in mind the bed is electric - it raises, it lowers, it sits me up. It even makes the tea and the toast!

Things are going well with the carers. They come in four times per day. I need them in the morning, and also the evening visit. I rarely need the the lunch or afternoon call, but I found out that if I cancel the call, the carers lose money, so they still come round, and we have a tea or coffee, or something. 

I'm booked in to have an MRI scan next Monday. That will tell me a few things. It will tell me whether I've had a relapse recently. If, as I expect, it shows no new disease activity, it will add weight to the argument that I've entered the secondary progressive phase of the illness when I see my Consultant a few weeks later. 

Whilst I'm at the hospital next Monday, I've got an appointment to have an ultrasound scan on my abdomen. They want to look at my liver. As already said, blood tests have shown my liver function levels are high, so it looks like one way, or the other they'll be stopping my disease modifying treatment quite soon.

Kind regards,

Dan

6. Liver

As you know, I've been bed bound since Friday. I feel a lot more positive about it today - so far - than I did at the weekend. 

Have I accepted my fate then? Dunno. Have I got used to my predicament then? Dunno. Do I think that I will get the physical levels that I have experienced of late back? Dunno. So it's a relapse then? Dunno.

There are more questions than answers. Only time will be able to tell me what I'm looking for, and I have plenty of that. 

I'm not so sure it's a relapse. I haven't had one for over two years - since before I started taking Gilenya. I've been labelled up as 'relapsing remitting MS' but I've been slowly progressing for about five years now. I think that's called 'Progressively relapsing'. There's my own diagnosis for you. 

I am also, in my wisdom considering knocking  the Gilenya on the head. Am I mad? No. I'm thinking along these lines for two reasons. The first is that age old conundrum that many of us have at some point or another, ' My disease modifying therapy isn't working anymore'. Nobody can tell you that with any certainty and the only way to find out is to stop taking it. Lots of risk with little to gain. 

The second reason is a bit more serious. The results of my liver function tests have gone through the roof! I've been having regular blood tests since I started taking Gilenya, because it can affect the liver. I've given no less than six test tubes of blood last week. They looked for everything from drink/drug abuse to Hepatitis B and C. All have come back clear, so I can safely assume that my disease modifying therapy is the culprit. 

I will - hopefully - speak to my MS nurse today and get them to speak to my Consultant about my concerns. Unless they strongly advise against stopping Gilenya, or they tell me my liver function test results are not dangerous. I'll probably knock it on the head. 

Kind regards,

Dan

5. A Shitty Story

I haven't written recently for a number of reasons. The first is fatigue. Yeah it's back. Back with a bang. I'm lucky if I can get out of bed by 11. Quite often, I miss lunch, it can get so bad! 

For the first time in what feels like years (this year anyway) I have woken up on a Saturday morning at half eight, bright and energetic.  I'm normally up by now on a Saturday anyway, to get my son ready for football practice, but that involves an alarm and multiple snoozes. 

I won't lie, I have laid in bed doing nothing until my recent 'normal' waking time anyway. But I feel really good today considering...

Considering what? Considering I shit myself yesterday! It was awful I was at the MS therapy centre Charms, just like I usually attend on a Friday and I felt a familiar urge I can usually hold that urge until I am at a more suitable place to go. This time I remember thinking, "I'd better go now!" I made my way to the toilet and that was it, my bowels erupted! I unleashed a full bowel into my pants. "Fucking Hell". I cursed. That wasn't even a two minute warning.

Mum, as usual tried to justify it by asking if it could be the prawns I had for lunch? You're thinking , it could be a possibility. Just like it could be a possibility that when it happened last month it was because I might've had food poisoning. Eyes wide shut, Mum. 

Bowel incontinence is a symptom of MS. Terrific! Where to now? I did a bit of research into using a Peristeen. 

A Peristeen is a catheter that you stick up your bum. Then you pump a certain amount of water into said bum (no, I don't know how much yet) and as the water comes out, it flushes any faeces out with it. 

You do it at a certain time every day. Preferably after a meal. That way your bowels will be in motion anyway. 

Oh the joys of MS. As Richard Prior - comedian and fellow MSer once said, "MS stands for More Shit!"

Liking the irony, Richard. 

Regards,

Dan