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

Just a quick one!

(Friday 20th)

As it is very late and I need to be in bed, this post will be a quick one. 

I have been out tonight watching Martin's play again. I went with a friend and we went for something to eat afterwards. We don't make a habit of it, so it was a treat for us all! 

I haven't had any reply from the MS nurse today and as I was quite upset at lunchtime, Martin suggested that I email my consultant too. I have done that now and so it is just a waiting game. I just hope I am not waiting too long. 

I have worked today and then went straight to the theatre. I am surprised I am still functioning, but I think as long as I don't stop I am OK! I am trying to keep myself busy, so that I don't have to concentrate on the pain. Distracting myself isn't taking the pain away, it's just not allowing me to wallow.

Bed will be a welcome sight tonight and I am hoping that because I haven't stopped since lunchtime, I will sleep well. I can but hope!!

XxXxX

Thursday again

It's Thursday again! I like Thursdays because generally I can just wake up when I like. Except today I wasn't able to as I was woken up by the door bell. The dustmen needed me to move our car!! I wasn't impressed. I decided I wasn't ready to get up so I went back to bed. That was a good move as I slept for another two hours. 

So I got up and I really did have a lazy afternoon. I just watched television and did some stuff on the computer. I didn't feel too bad as far as fatigue went, but I still had a nap for half an hour. 

I was still in lots and lots of pain. I have sent an email to the MS nurse. I decided that I didn't want to call her as I knew I would just be a weeping mess. I am still waiting for a reply. I am hoping they can come up with some stronger medication that I can take. I have questioned as to whether this could be a relapse. It is definitely a worsening of the symptoms and has been for a couple of weeks now. It was suggested at one point that it was probably due to a chest infection I had in January, but would it be this persistant, especially since the infection cleared up a few weeks ago? I always find the relapse thing a bit confusing. As I always have symptoms and have had from the first day, it is hard to say when a relapse is happening. 

I am going to make an appointment tomorrow to have a massage done next week. I had one in October and I really enjoyed it. It did help my hands although the affect didn't last for long. I have to at least give it a go. I have run out of ideas for anything else to try.

This evening I went to the Theatre, to support Martin, who is the lead in a play. Dial M for Murder. It was a good distraction and very enjoyable. Although I am not sure I like Martin as a sinister character! I am going to see it again tomorrow and Saturday, that's dedication for you! I do enjoy watching him perform. I guess I am able to live it through him. I know I am biased but he is very good and I am proud to support him.  

It is late now and I need to go to bed. I have work tomorrow. I also have the option to go to an MS exercise class, in the morning, but I just don't feel I am up to it. I haven't been since before Christmas, so I feel as though I should go, but I don't want to aggravate the pain any more than I can help it.

Anyway night night all, I hope it is a peaceful one. XxXxX

Pain, Pain, Pain.................

When I decided to start this blog, I was determined to be open and honest, but I didn't want to come across as whining and pessimistic. 

Today though I am afraid is a down day. 

I had a reasonable night's sleep but I still woke up feeling exhausted. I had work today and I was determined to go. So I got myself organised and went into work, but boy was I in pain. My feet are unbearably painful. Every time I take a step it's feels like I am walking on crushed glass. They constantly pulse and burn as though I have been out in the freezing cold. My walking was slow and steady today. I made it onto the checkout and stuck it out for two and a half hours. I should have done three but I just couldn't take any more. A colleague asked me why I had come in when I was in so much pain. I thought about it and then thought I would only be sat at home getting frustrated at having given in! It took me a while to walk back from the checkouts to the back of the store, because walking was so painful. My manager let me go though and I have arranged to do an earlier shift on Friday. I was quite emotional when I finished work. I think it was a mixture of pain, frustration and fatigue all rolled into one.  

Once I got home, I took painkillers and just tried to relax. But I can't. My feet are driving me crazy. I am at a loss of what to do next. I am on the maximum dose of Tramadol, I have this Butrans patch and I am taking Ibuprofen. Surely there must be something out there that can help me? 

I think I may call my MS nurse tomorrow, but I don't always feel as though I get anywhere when I speak to them. That is not meant to disrespect them, but I think I must be such a nightmare for them and they have run out of ideas.

Inside I am screaming. I just need some relief from this. 

I apologise that this is such a negative post, I will try and do better tomorrow!

Chill out Tuesday!

Tuesday's are much like Thursday's for me, in that I don't have to work. So I use it to rest and recuperate in preparation for work tomorrow. Unfortunately, today, much like yesterday, I have felt quite spaced out. I am more and more convinced that it is the patch making me feel like this. Unless it is a strange feeling of fatigue. I found it difficult to get up today. When I did though, I just felt like I wanted to sleep again. I was able to chill out this afternoon, which I needed to do, as I had a rehearsal to go to tonight for the Show Boat concert I am involved with. We only have four and a half weeks before we perform - that for me is very scary!
I was in quite a bit of pain this afternoon, with my feet, particularly. I could very easily have said that I was going to stay home tonight, but that would have been giving in to it and I try not to do that. So I went off to the rehearsal and I am very glad I did. Not just for the fact that I was able to cement some more of the songs into my memory, but for the support I received from fellow performers. It is so refreshing to see that people really care. They want to make it as easy as possible for me without making a fuss. It's like at work, I don't want special treatment, just understanding that things are a bit different for me! We are rehearsing in a primary school (the one I attended all those years ago, which is a bit surreal!) so the chairs a quite little. Last week I was struggling to get up out of my chair. I needed the help of friends around me to get me out - funny but embarrassing. So this week I requested a slightly bigger chair! Great effort was made to get me a chair that would be suitable. I felt quite embarrassed because I didn't want a big fuss made, but they went about it with no problem, just so that I would be comfortable. It restored my faith in human nature!
It's off to bed now, so that hopefully I can get a good night's sleep before I have to work tomorrow. I sometimes wonder why I am doing it to myself and then I remember, it's my life and I want to make the best of it!
XxXxX

That Monday Feeling!

Monday - yuck! I felt quite woosy when I woke up this morning. I thought a shower and a cup of tea might snap me out of that. But no! I took Martin out to his job and then went into work myself. I felt really out of it. I'm not sure if I was just really fatigued or if it was the pain relief patch taking effect on me. I do know that I felt pretty rubbish. It wasn't helped being told that I looked "very pale" and "grey"! It fills you with confidence!
I managed a couple of hours before some caring colleagues decided I was struggling too much and so they arranged for me to go home. I am very lucky in that my colleagues really do look out for me, and I do appreciate that very much. I am very stubborn and will try and stick it out even when I know that I should be sensible. In my mind, I have this great big thing against me, so I have to prove that I am worthy of my job. Deep down I know that I am being silly because that isn't the case at all, but when you have something against you, it just makes you more determined to prove it is not a problem - or is that just me??
I came home and had a bite to eat, hoping that might revive me, but I was still struggling. After I had picked Martin up again, I had a cup of tea and sat on the sofa. You guessed it, the next thing I knew I was waking up after falling fast asleep!
I am hoping for a good night's rest tonight and a more positive day tomorrow!

Quiet Sunday.

So today has been a fairly quiet day. We got up and had to go out for a singing rehearsal. We (hubby & I) are both involved in a performance group called How Apt. A website is on it's way so I'll put the address up when it's done. We are 5 singers and a pianist, who perform musical "stuff"! We are only at the beginning of our collaboration, so we are working hard at making it professional. We have more rehearsals next weekend. 

I am very excited about it and about being involved. Since having the MS I haven't performed in any shows. I have done the odd concert which has been great and kept my hand in. But, as I use crutches (and of course the fatigue), it is difficult to be involved in much. I was delighted to be asked to be a part of this group for a couple of reasons. Firstly, the crutches don't matter - it's my voice they want and secondly, someone is showing some faith in me and my abilities. My confidence has taken a nose dive over the past few years, so this is just what I need to get me up and out there. It is a time filler too, what with learning the songs etc!

The singing has been really uplifting for me. I am involved in another concert in March. Someone else showing faith in me and again looking past the crutches. I have a solo to do, which I was unsure whether to even audition for. I haven't auditioned for anything for over 6 years, so to say I was terrified was an understatement! But I landed the solo. It's "Can't Help Lovin' Dat Man" from Show Boat. It's a concert version of Show Boat that we are doing. I know it will take a lot out of me, if nothing else just the nervous energy will wipe me out. But it is very important to me and secretly I am chuffed to bits!

After the rehearsal, we came home and just chilled out. Of course it involved me sitting on the sofa and falling asleep! On an uncomfortable sofa, that's quite an achievement, I am really looking forward to the new one being delivered! In fact I can't wait!! We have had our weekly dose of "Hustle " and "Lost" and I was on my way to bed when I realised I hadn't written on here. It's always at night that I get my inspiration!!

Work tomorrow, so I must go to bed now! The start of another week, what will it hold? Will the pain ease, will the fatigue hit me hard, or will it be a good week??

Missing link!

http://www.mult-sclerosis.org/fatigue.html

This is the link I should have put with the last post! Doh!!

Crashed!

Well, the fatigue crash that I thought might happen tomorrow has happened tonight :(

I was going along quite happily today, feeling quite awake and so I did a bit of tidying and I dyed my hair! I must say I am happy with my hair!! I sat down after I had done these bits and low and behold I fell asleep. I have to explain though that when I say I fell asleep, it's not like just a light nap. I am completely out of it. And I have no control over it. 

I had heard of fatigue before I had MS, but I never really understood it. I assumed it was just feeling more tired than normal, but it's not. It is something that takes over completely. I find that I am not able to complete ordinary tasks without a lot of extra effort. It can be very debilitating. 

Click on the link below for a detailed description of fatigue in MS. It made me feel as though I was reading about myself!! (I hope I have done this right!!)

So an early night for me tonight! 

XxXxX

The Weekend!!

Yay! It's the weekend and even better, I don't have to work!! That is such a great feeling, to have two days ahead of me where I can just chill out and relax. 

I have put the Butrans patch on that the Doctor gave me yesterday. The only problem is that it will take a couple of days to have any real affect. I'm very impatient, especially where pain is concerned and I want the help to start now and not in a couple of days! Is that too much to ask?? The doctor also gave me assurance that I can take Ibuprofen without too much worry. I was a little concerned that, taking them at least a couple of times a day, wasn't the best idea. But apparently that is fine!

On the plus side, fatigue isn't too bad today. I am always a little wary of that though as I usually pay the next day! Oh how pessimistic of me! I have made the most of the lack of fatigue by finally getting around to dying my hair!! There was far to much grey showing and that needed to be addressed. I have had the dye since before Christmas, but only now have I felt fit enough to be able to stand doing such a task. It's the little things that get so frustrating. It's amazing how much I used to take for granted. 

Obviously I am still very new to this blog stuff, but I am enjoying what I am doing. I hope to be able to put some links to MS related articles etc. If anyone else has any they want to put on here then please feel free. I am self teaching so it could take me a while to get my head around it all!!

Happy Valentines Day, to one and all and my you all have a lovely weekend!

XxXxX

Butrans

Friday 13th!! I've been to the GP this morning to talk about my pain. I am currently taking Tramadol at the max dose and I wanted to know what else I could try. She has prescribed me a Butrans patch. It works over 7 days and is a slow release painkiller. Opiod based I believe. You get 2 weeks supply, but she has said she will continue prescribing it if I benefit from it. I have used it in the past and have found it helped me to deal with the pain a little better. So from that I believe it is worth another go. 

I am off to work this afternoon, which I am just hoping won't involve much walking about. My feet are unbearably painful. I have decided that it feels like I am continually walking on crushed glass..........ouch! I said to the Doctor that it would be very easy for me to just stay at home at the moment but I am not prepared to do that. It's hard to explain, the pain is so bad, but if I just stay at home, that to me is giving in. It is better if I just try and work through it. The Doctor did remind me that it is bad at the moment but it will ease off over time. I have told her that I am holding her to that!!

I have the weekend off so that is also incentive to get through my shift today. I know I will be proud of myself if I achieve it!

I will let you know how it goes!!

XxXxX

Fatigue.

Thursday - I like Thursdays. I generally don't have to do much on a Thursday, so it gives me a chance to just rest and catch up. After working yesterday AND getting up at 6AM, I am paying for it. Fatigue has hit me hard today. I got up for an hour at 8am but went back to bed at 9am as I was feeling really fatigued. I didn't wake up again until 1pm!! I got up and have just had a lazy day on the sofa. I had to pick Martin up this afternoon, so I have been out of the house today but low and behold by about 5pm I was asleep again. It's just been one of those days and I regularly feel guilty (or lazy) for sleeping so much, but I am learning that if I didn't need it then I wouldn't do it! I spoke to a GP about it once, saying about my worry of giving in to it etc. She promptly told me that I am not giving in. If she prescribed me a medication for something then I would take it without feeling guilty. So look at sleep as a medication for fatigue. She has a point!

Today!

Wednesday is a work day. I work in the afternoon and it is probably the best shift of all the ones I do. I only returned to work on Monday after a few weeks off. I have had a chest infection that has affected the MS. I am finding that even though I am over the infection, I am still struggling with symptoms. Pain is a major issue with me and at the moment, wow, is it a problem. My feet feel like they have been slashed with razors - not that I know what that would feel like!! My hands are painful too. Particularly my wedding ring finger. I know not why?? 

I usually make sure I get a good lie-in on a Wednesday but today I was up at 6AM!! I am pleased to say that work was good today. I am unofficially the PA to my 2 managers. Basically I respond to the complaint letters etc. I was catching up today on letters that have come while I have been away. I usually work on the checkouts, so it is a nice break not to have to face the customers!! 

It was going to be an early night tonight but I have got really involved in this blog! I'll be catching up on the rest tomorrow then?!

XxXxX

My idea!

So my idea for this blog is to highlight life living with a chronic illness - in my case, Multiple Sclerosis. I will try and post daily updates and would welcome any input, whether that is advice or comfort or answers to any questions. I want to be able to show that life doesn't stop. I still have so much to give and I plan to keep giving! Feel free to tell me where I am going wrong (or right!) I want to be as open and honest as possible, some days that may not be as rosy as others. 

Wish me luck!!

XxXxX