Yesterday!

I didn't get around to doing a post yesterday, the day just seemed to disappear! 

I am pleased to say though that I had a slightly better day than I had the day before! 

I went into work yesterday afternoon and we were really busy. Although it can be a pain, it is also good from the point of view that the time goes quickly. Especially when you are only doing 3 hours!

When I had finished, I dashed home, picking Martin up on the way. I was due to have a rehearsal for the solo I am doing in the Show Boat concert. We were debating whether to phone my friend and musical director, Rob, to see if I could change it and go on Monday. Martin & I were both shattered and I wasn't sure whether singing was a good idea. After a lot of faffing about I decided that I didn't want to mess Rob around and so I sent him a text telling him I was on my way! Actually I was glad that I went. It was good to go through the song with someone who has so much knowledge about music AND who is also a very dear friend. I feel a lot better about the song now and we have worked out ways of making me feel more comfortable with it. 

I couldn't understand why I was struggling with notes that used to just flow easily. But then it is like anything, if you don't keep up the practice then you lose the ability. I am glad that I am involved in some singing projects because that is forcing me to use my voice again and it's practice and confidence that I need to regain. 

Singing is a real passion of mine, it is a great way to express myself and gives me freedom. So to be doing it again is a definite positive in my life!

As you can imagine by the time I got home I was truly exhausted, but I had the joy of four days off work to look forward too!! Knowing I don't go back in until next Wednesday feels strangely comforting!! I am going to use the time to get my head around some of the songs for How Apt. (www.how-apt.com) 

We have a rehearsal tomorrow so I want to be able to say I have learnt some of the songs!

XxXxX

Not A Happy Bunny!

I am feeling pretty down tonight. 

Which is a shame after feeling so bright yesterday! It probably doesn't help that I got up early this morning, I went and did my grocery shopping (on my own), then came home and put it all away. I also did a bit of sorting out in our conservatory in preparation for our new sofa and chair arriving. I think I may have over done it a bit. My hands are very painful tonight and it is now getting me down a lot. Another thing is that, I can't understand why I haven't heard back from my MS nurse or the consultant, when, I sent emails a week ago saying how painful things were. Maybe I am making it all up? 

I keep reading about all these pain medications that sufferers of other illnesses get - couldn't something like that help me??

I hate being like this. It is not who I am, or how I want to live my life. I am not generally a self pitying person. I like to just get on with it. But I did say that I was going to be honest about things, and that includes the good and bad. 

I know I have done a few things today but in the grand scheme of things it wasn't a lot really. Any healthy 35 year old would have managed all that with out thinking about it. Why do I have to think about it?  

Anyway that's my whinge over! I will go to bed, hopefully have a good night's sleep and wake up in a positive frame of mind tomorrow - here's hoping!!

XxXxX

Good day?

I am happy to say that today feels as though it has been a good day. I am putting it down to the massage! I think the fact that I was able to get a good night's sleep and I felt relaxed has really helped me. I'm not saying that the pain has gone, although I wish I was. That is still as persistent as ever and I still haven't had any reply from my emails last week. But I do feel that because of feeling more relaxed, it has helped me cope with it all a little better. 

I have been into work today and completed my whole shift. I felt quite bright and positive which is this first time for ages that I have felt like that in work. People were actually able to see a bright side of me for once!! That being said, I generally try and cover it up at work. Though the colleagues who know me, still tend to notice when I am having a bad day. I always think I am carrying on quite well and then someone will comment about me struggling! 

The problem is that because I feel positive I have tried to do a bit more today. Tidying up and ironing etc. I am hoping I haven't over done it and undone all the good work from yesterday................ time will tell!!

So the moral of this story is, that I think I have found something that has a positive affect on my MS - massage. Even if it doesn't help the pain, if it gives me a good sense of well being, then something good has come from it. 

Let's see how I will be feeling tomorrow!!

XxXxX

Massage Tuesday!

This was the day that I was looking forward to. I had had quite a bad night's sleep and struggled to get up. So the thought of a massage was great. I was a little concerned that I might fall asleep through it though!!

Kirsty, the massage therapist, is lovely. She is fully aware of my situation and we had agreed that she would use light pressure, because of the sensitivity issues with my skin. The last one I had was an Indian head massage, which was done on a proper chair. That was great but I did find that I was aware of my legs falling off it. I am unable to control what my legs do, so it was a little difficult. This time I was having a Destresser massage, which meant I was on the bed. I found this to be much more comfortable and as it moves up and down, it was easy for me to get on to it. 

When Kirsty started on my back, I did wonder if I was going to have to ask her to stop. The sensations on my skin on my back were really painful. I hadn't realised just how painful because I don't touch my back! I decided that I would let her continue a little bit longer and see if I could bare it, to see if it helped in the long run. It was interesting because the quicker she rubbed the skin, the more painful it was and the slower, the more bearable it was. I guess that's to do with the amount of friction generated. 

So I managed to hold out for the back, as she then moved up to my neck and shoulders which weren't so painful. I then turned over onto my back so that she could continue with my neck, face and head. That was my favourite bit! It was wonderful to have the points on my face soothed. I felt so relaxed at the end!

I told Kirsty how I had felt about the painful sensations etc and we have decided that next time she will combine the two massages. I will lie on the bed because that was by far the more comfortable. And she will mix the two massages with the bits that were the least painful for me. Needless to say I have booked my next one already!

I have to admit that I had a great night's sleep last night. It's amazing how much a massage helps with a lot of things. Of course it feels great but the added sense of well being is really important. The fact that she is bringing oxygen to parts of my body that don't very often get it. 

I have decided that a massage is an important event that I need in my life and I am going to try and fit it in every couple of months.

Thank you so much, Martin, for suggesting that I get on and book it. It was a great suggestion and one I feel I have benefited from. It will be interesting to see how long it lasts!!

XxXxX

Bleary eyed Monday!

Oh my goodness, is it Monday already???

I think the activities of the past few days are finally catching up with me! I thought I was tired yesterday but today I have been really out of it. I went in to work, but I did warn them that I was struggling today. I do feel quite proud of myself though because I managed three hours of a three & a quarter hour shift. I did wonder if I would even make it in this morning, so I didn't do too badly!

I find it quite easy to get frustrated with myself for not completing the whole shift, but I am learning to turn that around and look what I have achieved rather than what I haven't!

When I got home, I had a nice chill out on the sofa. I am looking forward to my massage which I have tomorrow afternoon! It will be a real treat and I am hoping it will help make me feel a little bit better. 

I have not heard anything from my emails, but I thought I might not. I will just have to keep waiting and hope that someone gets back to me, with some ideas of stronger pain relief. If not I am not quite sure how I will feel. 

I have been looking on websites today to try and find crutches. I already have a set of the comfy crutches, which are a God send and so much better for my hands. But what I am looking for is a coloured pair that don't look like NHS ones! When we are doing our singing gigs, I have said that I will need to use at least one of the crutches and I might need to use both. Ideally I would like to get some black ones, or a nice deep colour. Or failing that I might go for red ones!! Does anyone know where I can get any quite cheaply?? Bearing in mind I am in the UK. Also can anyone tell me the practical difference between the full cuff crutches and the ones that your arm just sits in? Are the full cuff ones more stable? From what I have read the open cuff ones seem to be ergonomically designed like that so I would imagine they are fairly sturdy and comfortable. I would welcome any thoughts on the subject!

I hope everyone has had a good start to the week!

XxXxX

Sleepy Sunday

Today started with me sleeping until about 1o am. I got up and went down stairs, only to fall asleep again by about 11 am. How useless is that? It has been a tiring weekend though and I guess the last few days have taken it's toll. 

I changed the butrans patch on Friday, as you only keep it on for 7 days. I am really unsure as to whether I can say for certain, if they are helping with the pain. The positive side of me is thinking that maybe they are helping me to deal with it. But then the realistic side of me is thinking that it really shouldn't be this painful. So I don't know what I think about them. My doctor did say that she would re prescribe them if I felt they were worth using. I'm not sure what to do, but I think I might ask her to do another prescription anyway. That way I can use it if I want to.

I have booked myself in to have a massage next week. I am looking forward to it a lot. I have to ask for it to be quite light to start with as the sensations on my skin make it quite painful. But I had a massage back in October and it did help with my hands, if only for a day or two, so I figured it can't hurt to try it again.

We had a rehearsal with How Apt - our singing group. Things are moving on fast. We have three gigs booked at the moment, the first is March 29th!! If you want to read a bit about what we do then the website, which has only gone live today is, www.how-apt.com   Go on check it out!!

It's off to bed now as I am still shattered and I have a reasonably busy week ahead. Let's just hope it is as pain free as possible!

XxXxX

It's the little things..................

................ that I find quite annoying. The things we all take for granted. Like having a shower. I promised that I would be open and honest so here goes.

I have various things around the house to help me. I have two banisters on the stairs for me to use when going up and down. I have a selection of implements in the kitchen, for opening bottles & jars etc. I have a perching stool, for me to use when I am doing things like cooking, ironing etc. I have a bath board, which is a seat across the bath, so that I can get in and out more easily and I can sit whilst having a shower. I also have a hand rail over the bath to help me stand up and to hold onto whilst I am showering.

I was mortified when these things were suggested to me. I didn't need anything to help me. How ridiculous. But actually, I couldn't have a shower if it weren't for the items I have in the bathroom. Even with those things, having a shower is a real issue for me. I don't shower for it to be refreshing and revitalising. I shower because I have to. It takes an enormous amount of effort, but also it's the little things that are a problem. The water itself on my skin. I can't always gauge the temperature. Quite often I have it cooler than I think it is because the water on my skin feels like needles being stuck in me. And then drying myself afterwards, boy can that be painful. I remember an occupational therapist telling me once that I should rub my skin frequently because that will help with the sensations. You try rubbing your skin when it feels like someone is stabbing you with thousands of needles and then tell me it helps. 

Washing my hair can be difficult because my head is sensitive. Then drying it - holding the hair dryer....! Although I have these aids in the bathroom, quite often it is a struggle for me to get out of the bath. Martin is a great help with that! He is not always around when I shower though, but that doesn't mean I don't do it! Having clothes on can be a painful event at times, although I have tried to programme myself not to think about it - that's better than going around naked!!

In the kitchen, I was forever asking Martin to open tins and bottles for me. Until he bought me a magic tin opener that just sits on the tins and with the press of a button takes the lid off. I often burn myself on the oven, because I just don't realise that my hand is on something hot.

As I say it is the little things that people take for granted, that can be really difficult for a disabled person. But that doesn't stop us from doing these things. It's amazing what is out there to make our lives easier, as long as we are not too proud to use it. There are still things that I find difficult to use because I would rather struggle than admit I need the help. Even behind closed doors, where no-one can see me, my pride takes over - daft eh?!!

And then there's my car................... but that will be the next post!!

XxXxX