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

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

XxXxX

Opiate Withdrawal.........It's Hell!

Morning everyone!
Well it is 4am right now............and another night goes by with me not being able to sleep!
I'm getting SO frustrated :-(

So I saw my pain consultant on Monday. I had no need to worry, all the things I'd convinced myself, in my head, that he was going to say didn't happen at all!
He is still just as keen as I am to see this through & get me off the Oxycodone.
He feels that it is really important to get it out of my system so that we can start again. He says that the evidence is quite compelling that people who are on high dose opiates, over a sustained period of time, can become susceptible to the possibility of the drugs causing pain & they now know why or how that happens.
He also completely understands that I want to be in hospital to see it through. The problem is that there is a virus at the hospital & they aren't doing many admissions.
So I am stuck playing a waiting game & in the meantime I have to just put up with all the symptoms I have, whether they are normal MS symptoms or whether it is withdrawal issues.

He has advised me to go back up to 40mgs........let me back track a bit and explain!
I was on Oxycontin (Targinact) for around 18 months & I was on 80mgs a day. 40mgs in the morning and 40mgs at night. Oxycontin is Oxycodone it's just a slow release tablet over 12 hours rather than a short acting tablet (as far as I'm aware!)
I started the withdrawal....blissfully unaware of what I was doing or what I was letting myself in for. I'd come off tablets before and never had any problems!
I got down to around 20mgs a day when I started to experience nasty withdrawal symptoms.
Spasms in my legs, which I couldn't control. I felt sick, I had headaches, I was shaking but from deep inside, I couldn't sleep, my body was buzzing all over & my pain levels went through the roof.
So I was advised to increase it slightly again until I could be admitted to hospital to complete the opiate withdrawal.
I increased it to 30mgs expecting to be admitted fairly rapidly but that hasn't happened so my consultant has advised me to increase to 40mgs a day & see if that helps at all with the pain. He said that it's a significant increase so I should notice a difference....if it's going to happen.
If I don't feel any relief then I'm to drop back down to 20mgs & wait for the admission.
All I can do is try the increase and wait to go into hospital. I only started yesterday so fingers crossed!

It is so frustrating!
We are trying to be as positive as we can to get us through this situation. Because believe me, Martin & I are well & truly, in this together......thankfully!! ;-)
As much as possible we have been looking at ways to distract ourselves from what's going on.
Fortunately we have a few, very exciting things coming up this year!

I have someones 40th birthday party to organise!! And we have a big holiday to look forward to, so we are trying to focus on those things as much as we can!
It's not always easy to do though & sometimes you just want to have a hug and admit that it's a crap situation!

It's one thing that Martin & I have learnt over the past ten years of being diagnosed with MS. It's really important to have things to look forward to. They don't have to be big things, like ours are this year, just a day out or a weekend away. Things in the calendar that we can focus on when things get a bit rough!
What I desperately would like is to sleep through a lot of it, but wow, has my sleep been affected by this withdrawal. I can literally spend the whole night awake.
I try to sleep but it just doesn't happen. I've tried relaxation, deep breathing, all sorts, but nothing gets me to drift off.
Unfortunately tonight is one of those nights.
And the pain I'm experiencing is horrific. My feet are agony. I've tried to explain it before but it feels like someone has slashed them with a razor, my lower back feels like someone is stabbing it with thousands of pins and my hands, well, they are burning and the palms of my hands feels like someone has put loads of little cuts all over them.........it really isn't very pleasant! :-(
The other thing that is really annoying is that I have taken my Oxycodone, I have also taken two lots Oramorph (Morphine) as well as Ibuprofen but I'm still wide awake!
This is another reason why I am so determined to continue with & to complete this withdrawal. My body has become so tolerant of these really hefty drugs that nothing is knocking me out when they should be.
Is that too much to ask?!

Anyway having had my rant and having killed an hour I'll now go back to my party planning.
You see there is a positive to all this!!! ;-)
XxXxX

Still No Let Up!

OK, so I'm now in the third week of waiting to go into hospital to withdraw from Oxycodone & it's getting really frustrating!
I'm seeing my pain consultant on Monday so I'll be able to ask him what's going on.
The thing that I'm afraid of is that he'll tell me to just come off these drugs on my own at home & I really don't want to do that.
I do want to carry on with this. I'm desperate to get these drugs out of my system so that we can see where we go with it. I have eternal hope that, even if I end up going back on these drugs, I'll be able to go on them at a lower dose.

If that happens then this will have all been worth it!

But I am really anxious about my appointment on Monday.

I had an interesting appointment with my psychologist yesterday.

I told him that I have this appointment & my fears that my pain consultant will just tell me to come off the drugs but to do it at home. I told him that I really don't want to do that. In fact I'm scared of doing that. I told him that I do still want to do this but that I really feel I need the support of being in hospital. My psychologist said that it's OK to feel like that & it's OK to say that to my consultant. To ask to go into hospital. This is still a huge thing I'm going through & to want the security of hospital is to be expected.
One thing he picked up on is how I've already decided in my head what my pain consultant is going to say, what the outcome is going to be and that it's not going to be what I want to hear. I have nothing to back this up though of course!

Instead of just waiting & seeing what is said, I pre-empt it & it's always going to go against what I want. I do this a lot!
It was interesting because I said how I felt that I was being a coward because I didn't feel I could just get on & do this at home, but he said I should have more compassion for myself.
That took me aback - how many of us really have compassion for ourselves?

We are all taught to be compassionate to our fellow man but when & where are we told to be compassionate to ourselves?

He asked me how I would feel if it was someone else in this position. I was very quick to think that it would be OK if someone else was struggling with this situation. In fact I would be supporting them to go into hospital & get support, so why do I feel that it's so wrong for me to feel like this?!
We had a good discussion & I do understand what he's saying but putting into practice could be more difficult!
Being hard on myself is what I do best! ;-)

Love & hugs

XxXxX

Feeling Rough

Oh boy am I feeling rough today :-(

I have buzzing all over, it's like fireworks going off all over my body. I'm amazingly tired and yet I haven't done anything and my lower back feels like someone is stabbing me with thousands of pins, it really burns. :-(

I only got up today because I needed to take my tablets but I could very easily have stayed in bed all day today. Maybe I need a set of tablets upstairs from now on?

I'm getting pretty fed up of this whole Oxycodone withdrawal too.

I'm still waiting to hear when I can go into hospital. I phoned the pain clinic on Thursday only to be told that they aren't admitting anyone at the moment because they have a virus in the hospital.

I completely understand that they can't let people come in but I'm so frustrated. I just want to get through this whole thing but I'm stuck waiting and I have no idea when I'll be going in.

I have an appointment with my pain consultant on February 20th and I suspect that I'll be going to that before I get into hospital!

I'm terrified that he will say that I need to just get on and do the withdrawal myself, at home, and I really don't want to do that.

I feel a bit of a coward but I just know it's going to be hell and I need the support of being somewhere where there are people who know how to help me.

I also feel that it's not fair on Martin if I have to do this at home. He is the one that will take the brunt of it and I don't want to do that to him.

It's such a difficult situation and I guess I just need to wait and see what happens.........all the time dealing with all the pain etc :-(

In the meantime I'm still trying to distract myself with the positive things I have to look forward to!

We have a party, a holiday and the Olympics to enjoy this year!

And I'm so grateful for all of that because it's giving me something else to think about and something else to focus on.

Organising Martin's 40th party is no small task! And then going on a six week holiday takes some planning!!

They are both things that I am so excited about and will be so great!

It is really important for us to have things to look forward to. When you are in the position of having a chronic illness that has totally changed your life, it is really important to have good things that you can focus on and look forward to. It gives you a purpose and helps to take your mind off things.

I'm not saying it gets rid of the pain or the fatigue or whatever issues you have but it just helps to remember the good things that you have to look forward to when you are going through those hard times.

So bring on May 5th/6th and May 8th...............................12 weeks and counting!! :-)

XxXxX

Cold, Cold, Cold :(

Wow, it's turned cold!

Does anyone else suffer in the extreme cold or hot temperatures?

I have a real issue with both the extreme cold and extreme heat.

My pain levels increase dramatically.

When the temperatures drop, as they have done recently, I struggle to keep warm. The pain that I feel in my feet and in my hands intensifies significantly and becomes really biting. And I find it really difficult to keep those extremities warm at all.

I had these problems last winter, 2010/2011, and I remember just how bad it felt. I have tried to prepare myself for the cold this year but I am still finding it a real problem.

I have got gloves, arm warmers, plenty of layers. For my feet I have got lots of socks, slipper socks, I've got a really snug pair of cosy slipper boots & I've even got a pair of microwaveable slippers!

But I still struggle with this biting cold.

The pain in my fingers and toes makes me feel quite sick. And it's not just the pain I feel when they are really cold but also when they start to warm up, they burn and those burning sensations are so so painful.

And actually, being in the South West of England, we don't have it as cold as other areas so I guess I should be grateful for that!!

Still, it's horrible :-(

Some of this that I feel is quite deceptive though because there are times when my feet or hands will feel absolutely freezing but when I get Martin to feel them for me he says that they aren't cold at all!

That's MS for you though!

And I have problems when it's too hot too. My fingers will swell and my hands will go bright red and puffy.

I can't win, I need a temperature regulator for my body! ;-)

I remember a Doctor saying to me once that the most predictable thing about MS is it's unpredictability..............he wasn't wrong!

I hope everyone is keeping as warm as possible!

XxXxX

Happy Birthday Mum

It would have been my Mum's birthday today.

We lost her on March 8th 2008, she was 70 years old.

We miss her every day.

LOVE YOU MUM.

XxXxX