Thursday, 15 March 2012

Hospital Here I Come! :-(

So I have finally heard from my local community hospital & as long as everything is OK & they have a bed available I'll be going in on Monday 19th March for the completion of my opiate withdrawal.
I have very mixed feelings about this.

I'm glad that they are getting me in, after all I've been waiting since the end of January! But to say I'm scared is an understatement!

Only the other morning I realised that I'd forgotten to take my tablets the night before. I knew as soon as I'd woken up because I felt really ill. I was shaking from the inside out & I had so much pain all over my body.

Now if I feel like that after forgetting them for one night, what am I going to feel like when I can't ease that by taking a tablet?

Don't get me wrong, this is what I want!

There have been several stages where I could have given in & said that I just want to go back on these but I didn't want that.

I want these drugs out of my system!

I was incredibly naive. When I started taking these meds I had no idea what they were. I had been told by my pain consultant to take them & so I did. We started off at a low dose, as you do, but as usual my pain wasn't responding so we kept increasing the dose.
What I was naive about was that I didn't know what it was that I was taking. I had no idea that this was an opiate or that it was twice as strong as morphine!
I had just blindly gone along with what I was told to do.
I am in no way blaming my pain consultant. It was up to me to check or, at the very least, to ask questions..........but I didn't! :-(
I think I had got to the stage where I would try anything. I have not been that successful with medication's working so I just went ahead with my eyes shut!

Maybe I didn't want to know?!?!?

Then, when I'm on a high dose & have been for about 18 months, my pain consultant tells me that there is new evidence to suggest that opiates can cause pain as well as help it.

Apparently when you are on a high dose for a lengthy time, basically you become immune & the pain becomes worse.
So because I'd had a period of unexplained increased pain, it was suggested that I come off the Oxycontin.
I had come off drugs before with no trouble so yes of course I'd do it!
He told me that it wouldn't be that easy and that the likelihood would be that I'd have to go back on it, but it was worth a try.
We decided to wait until after Christmas - nothing spoils our festive season!

I started coming off them quite quickly because I didn't really know what I was doing! I had problems after only a few days.

My legs were having spasms, I was shaking from the inside out and had headaches and was feeling sick. I spoke to an out of hours doctor who advised me to increase my dose of Oxycontin and he gave me some diazepam too.

I saw my GP and we came up with a plan for me to follow with taking the Oxycodone every 4 to 6 hours so that my body could tolerate it. I had originally been on Oxycontin which is a modified release tablet and lasts 12 hours. So going to Oxycodone meant I needed to take it every 4 to 6 hours.

I followed all this properly. At the start I had been on 80mgs of Oxycontin. So I was reducing down from that. I got down to around 20mgs Oxycodone and I was really struggling. This was really hard and I was feeling really awful.

I spoke to my psychologist because I didn't know what to do. He advised me to ask for help. Call my pain consultant and see what he suggests. So I did.

I got an emergency appointment and I told him that I was struggling to complete this on my own. I wanted to see it through but I felt that I probably needed to go into hospital to do that. He agreed that I should see it through. We wanted to get this drug out of my system so that we could start again.

This appointment was at the end of January. He said that he couldn't get me in hospital straight away but that he would get me in asap.

There have been problems because the hospital has had a virus and so there haven't been many admissions. I saw my pain consultant again mid February and he was now thinking that if he couldn't get me into the main hospital he would have a look at getting me into one of the community hospitals.

And so that is where we are now.

I have to call my local community hospital on Monday morning and check that there is a bed available. If that is all OK then I will be going in on Monday to complete the opiate withdrawal.

I am terrified! I know I need to do this and I am glad that I am finally going in to complete this process but I also know it's going to be hard and it's not going to be pleasant.

So I guess I'll see you on the other side! :-)

Love & hugs XxXxX

Tuesday, 6 March 2012

It's March already!! :-)

Well, I can't really believe that it's March already!
The days are getting lighter for longer & Spring appears to be on it's way!
So do the seasons affect you?
I think psychologically they do. But for me the climate changes do too.
My problem is that both ends of the spectrum affect my pain issues! Extreme cold but also extreme heat! And when I say extreme, actually it doesn't really have to be that extreme!
For me, because pain is one of my main symptoms, that's the one I notice it on most but I was wondering about my other symptoms too. And I guess the seasons do make a difference but not enough that I really notice it.
The fatigue is there all year round, although I have to say that the medication my consultant prescribed for me last September really is making a difference with that symptom.
He prescribed Modafinil 200mg for me. I generally only take one a day. And I have to admit it does keep me awake longer.
When he gave it to me he did say that they don't work for everyone. Knowing my track record with medications not working for me, I wasn't sure whether it would work or not, but in this case I can happily say that I have found something that works!
And it feels good to have something that helps!!
I try not to take it any later than 2pm though because otherwise I'm awake all night!!
I'm really glad that I have found this help because it will really help when we go on holiday! Which is now only 9 weeks away!!

The start to my year has been mixed!
I've had the issues with my opiate withdrawal, which I'm still going through.
I'm still waiting to go into hospital to complete the withdrawal & sort out this medication.
It's been so frustrating. If I'd known when I started this what I know now, would I have agreed to do this? I'm not sure?
I'd like to think I would have because although it's taken a lot longer than it should have, the reason behind doing it remains the same. To get me off this opiate & to assess whether it's been helping me or not. And if I have to go back on it, to be on it at a lower and more manageable dose will have made all this pain & frustration worth it!
Please remind me I said that when I'm going through the final withdrawal!

So that's been the difficult bit but the positives of the start of the year have been my ability to focus on other things.
I'm really proud of myself because I knew we had four months before Martin's 40thparty & then going on holiday and I really wanted to try to lose weight for those events.
It would have been really easy for me to use the pain I've been going through as an excuse for me not to eat healthily.........& believe me, I don't need much of an excuse to turn to chocolate!!
But I have a load of clothes that I want to be able to wear on holiday & I had a time limit, so my determination kicked in!!
Having the party & the holiday to focus on have been a god send! I really believe that if I hadn't had those things to look forward to, that I would have been on a slippery slope to burying my head in the sand with my moods & possible depression.
It has really proved to me how important it is for us to have things to focus on & look forward to. It doesn't work for everyone but it works for us!
So far I have lost just under 20 pounds! :-) We've got nine weeks to go so hopefully I'll get a bit further yet!
But I have discovered one thorn in my side! Tysabri!
It appears that after the last two infusions I haven't lost anything. And both times it's been directly after my infusion! So I'm altering my goals slightly so that I'm not too disappointed when I don't get as far as I want to with my weight loss!

The other thing that I have been doing is swimming.
I have always enjoyed swimming and it is something that I used to be fairly good at. So being diagnosed with MS put a stop to it for a while. I lost my confidence and even though a Physiotherapist took me once, I still didn't carry on with it, because I didn't trust myself and the sensation of the water on my skin was really difficult to deal with.
We are really lucky now though as we have a friend who has a pool that we are able to use. We are in a position to go when no-one else is there and that has given me the chance to find out what I can and can't do.
I can't use my legs properly at all and that is frustrating but I can still use my arms, so I have been able to build on my confidence and do some exercise.
I'm hoping that I'll be able to get a physiotherapist to come with me soon to help me with some exercises and show me how to strengthen my legs.
It's a really positive thing though, to be doing something that I enjoy but will also hopefully be helping to keep me mobile.
It feels really good & I hope to keep doing this for some time!

I hope everyone is keeping positive and looking forward to a brighter Spring and Summer!
Love & hugs