It's amazing how time just gets eaten up, especially when you have a chronic illness that eats up your energy and requires you to rest and recuperate more than most.
It is true to say that the start of the year wasn't the easiest I have ever had, but with the support of my friends and family, I am getting stronger.
My symptoms haven't changed, which is annoying and disappointing, but it is my attitude towards those symptoms that has changed.
When I was going through my two stays in hospital in January and February, I was told several times that the pain I was feeling was very real but that because my mood was low, that was contributing to how bad the pain was getting.
I couldn't get my head around that at all.
As far as I was concerned, my mood was low because my pain was bad and not the other way around.
I was & am seeing a psychologist. I have had several sessions and find it really helpful to talk through the whole situation with someone who has no connection to me at all.
I was & am seeing the pain clinic too. They had prescribed several pain medications for me, but I have not had much luck with any of them. I have found that really difficult to understand. How can things work for some people but not for me?
I felt guilty, I felt that I was doing something wrong. But having talked it through with people, I realise that not all medications work for everyone. Everyone is different and sadly I am just one of those people who has a resistance to a lot of medications.
I know that I am not the only person who has this problem, I have just never met anyone else who struggles with it, so it feels very lonely.
At the moment I am on the following medications
Targinact - Oxycodone/Nalaxone 40/20mg twice a day
Oxcarbazepine 300mgs twice a day
Baclofen 10mgs in the morning and 20mgs at night
Oramorph - Liquid morphine 10mls as required 2 hours apart
Oxybutynin 5mgs a day
Paracetamol 500mgs as required
Ibuprofen 400mgs as required
Escitalopram 20mgs a day
Levthyroxine 50mgs a day
I know that these are doing something in their own small way, otherwise I wouldn't be using any of them, but I am still struggling with very severe pain, especially at night and especially in my hands and feet. My right side is worse than my left.
One of the things that was suggested to me was that I was referred to a pain psychologist. The lady that I saw explained that being a pain psychologist meant that she specialised in how pain affects us and how it is all connected to our psyche etc.
She left me with a folder with some strategies to help me cope with my pain.
One of those strategies has been relaxation. I was given a CD and I have to say that I have taken to it really well. I have been making sure that I have done at least one exercise a day. It means taking time out for yourself, which I found hard to begin with, but having felt the benefits of it, I am quite happy to make sure that I am doing it on a daily basis now. Even if that is just to help me get off to sleep.
That has been a real benefit. It has helped me to get off to sleep so much better now and even when I am waking up in the early hours and I am in lots of pain, I have put the relaxation on and been able to calm myself down and get myself back off to sleep. This is something that I haven't been able to control very well at all, but it is making a big difference to me now.
My pain clinic Doctor also said to me that I shouldn't stop doing things just because they cause pain. It took me a while to understand this, but what he meant was to keep doing things I enjoy even if I know it is going to cause pain for a little while. Otherwise where is my quality of life?
I make handmade cards and I hadn't made any for ages. I had put it off because it was causing me a lot of pain. But I have started doing it again because although I know it is going to cause me pain, the pleasure and enjoyment I get out of creating cards is much bigger than the pain.
Or that is the theory anyway!!
It makes sense and has lifted my mood because I am doing something I enjoy.
We have also started swimming. I haven't been swimming for years. I used to be a really strong swimmer and I loved it. It is such a good form of exercise, but because I can't feel my legs in the water and it felt really strange to not be able to just dive into a pool and swim lots of lengths, I couldn't bring myself to do it any more.
But an opportunity came up for Martin and I to start going and we felt we needed to take up this chance.
We have been going for about three or four weeks now and when we first started I could barely do a width of the pool. I had no confidence in my body and knowing that I can't feel my legs I just assumed I wouldn't be able to do much. But I was wrong!
I started off by managing a width. I couldn't really use my legs but I was able to use my arms to get me across the pool. I can't really call it swimming but I am moving in the pool and that is worth it's weight in gold.
We went again last Thursday and I really wanted to try and do a length. I had built up my widths to doing 10 widths the last time I had gone. I have to stop after each width and I panic a lot when I am losing control, but perseverance is paying off!
So I decided that I wanted to try a length. I stayed very close to the side, I had to stop three or four times, but I managed that length! I was so exhausted afterwards but the sense of achievement was amazing!
I have spoken to my physio about the swimming and she is going to come with us and show us some things to do in the pool that will help strengthen my legs and arms.
I am really excited about it. I know I am not going to get back to diving in and swimming 30 lengths etc, but at least I am exercising and working my muscles. It is very tiring and my legs are like lead when I get out of the pool. I can't do anything else for the rest of the day, but that doesn't matter!
Even if it's not helping my body - which I am sure it is - it is definitely helping me mentally because I feel that we are being very pro-active and that feels really positive!
So all in all, I am in a better place than I was a few months ago. Which feels great!
It has proved to me that as long as Martin and I are doing things we enjoy and that we are keeping busy, I can keep fighting this illness.
The pain hasn't gone and I can honestly say my symptoms are possibly more obvious to me now, but it is true that if you have a strong mind it can help to get you through.
The weather is getting brighter, the evenings are getting longer and I hope everyone is staying strong and still fighting!
Love & hugs
XxXxX
That is why I hate taking medication. You never know which bits are working and which bits aren't. The ON I've been suffering recently - I started with Gabapentin for the pain. Which worked. So well, the pain went. The my vision went and they gave me steroids. Which don't seem to have been working... nearly done and I still can't see out of one eye hardly. ARGH!
ReplyDeletei can't stand all the meds.... i felt like they were making me feel worse than my symptoms... so i stopped taking them... the only thing it take now is the Copaxone. my symptoms seem bigger now but only because of being med free...but i must say i feel better this way...i can learn to cope with the crap if not so heavily medicated... about the only other thing i take is ibuprofen and an antihistamine for the headaches....
ReplyDeletei plan to start swimming soon.. i'm scared...afraid of getting into a jam while in the pool... just have to make sure my ol'man is in there with me when i go
Hi Nat, I'm sorry to hear you are going through it at the moment :-( I tried Gabapentin in fact it was the first drug they put me on, but it did nothing for me. I hope they get you sorted soon xxxxx
ReplyDeleteHi Sherrington, wow that was brave to go med free. I really respect you for that. Although I'm not convinced that mine are working for me, I know deep down that they are doing something, however small that may be! I'm not brave enough to face my pain without any assistance though :-( Excuse the pun, but take the plunge with swimming. It is so worth it & as long as you have someone with you, you will be fine. Get a noodle/wiggle too. It's one of those tubular floats that you can wrap around your body. I'm going to get one - it'll give you more confidence! Let me know how you get on........& good luck!
XxXxX
I forgot to add onmy list of meds that I have Tysabri every 4 weeks too. I have a portacath in my chest, you'd think I couldn't forget it eh?!
ReplyDeleteXxXxX
Hi Amelia,
ReplyDeleteSorry to hear you are in so much pain.
Glad swimming and relaxation exercises help you.
Did you ever get the sativex that should help.
I do not take anythring but baclofen for spasms and vaporise thc helps me relax and cope with pain, gives me an appitite and helps me sleep without side effects.
I occasionally use 2mg diazepam to relax and help me sleep and a sleeping pill lornmetazepam 2 mg to help me sleep if all else fails, but not regularly.
I really advsise getting some thc and trying it out, vaporising is best, you can get small vaporisers, hand held looks like a small mhobile.
I rejected pain meds because of side effects do not need to lose strengrth, balance, have headaches or get constipated with morphine.
Medicines may or may not do something.
One thing they all do is make you dependant.
and scared to stop.
If you can reduce some of your drugs and see what happens and then try them again to check.
Morphtine has nasty side effects.
The tysbri seems to me has made your ms worse, think you have been on it for a year with seemingly no benefit.
This is jtust my opinion which I hope you will not take the wrong way,.
Concerned abdout you.
Take care and enjoy all you can.
Love,
Herrad
Hi Amelia,
ReplyDeleteSad to see that my comment was not posted shame.
Perhaps my comhments are not want4ed by you if so pleasqe let me know.
This keeps happenging, hope I am wrong.
Love,
Herrad
Hi Herrad,
ReplyDeleteOf course your comments are always welcome, I've just not been near a computer to publish them. I have always published all your comments, it just may not be immediately, so I'm sorry about that.
I did finally get the Sativex but sadly it's had no effect on me or my pain. It did knock me out for a little while but that wasnt enough for me to be able to continue with it as it is so expensive.
The Tysabri hasn't made me worse it's just not made me feel any different. I have had a recent MRI which I will be interested to see the results. Because the feeling is that it is, from a medical point of view, not making things worse. And for the lack of anything else, I am on the best treatment possible at this time. We'll see! I've actually been on it for nearly two years. The misconception with Tysabri is that it should make you feel better. It's not. It's actually designed to slow down the progression. And it's hard to measure whether it is doing that.
I hope you are doing ok, I do love hearing from you, so please keep it coming!
Love & hugs
Amelia XxXxX
Hi Amelia,
ReplyDeleteWhat a relief, tho7ught I had upset you.
love,
Herrad
Hi amelia, im from greece and i found your blog accidentally..my mom has MS for 15 years, she has a lot of different sympoms..can you tell me your symptoms?i would like to share your symptoms in order to find if you have something mutual (as you know the sumpms of MS differ from person to person)! georgia
ReplyDeleteHi Georgia,
ReplyDeleteNice to "meet" you!! I'm sorry to hear that your mum has MS, that must be very hard for you & her.
I have a range of different symptoms, as do most MS sufferers but here are a few of my main ones - pain & numbness - pins & needles, fatigue, muscle weakness, muscle spasms, bowel & bladder issues & I have just found out that it is affecting my eyes too. I use crutches to walk with as my legs are weak & my balance isn't good.
Please feel free to email me if you would like any more information or if I can help you in any way!
Take care,
Amelia XxXxX