Staying Positive!

But it is so hard!

The pain is still an ongoing issue, but over the weekend new things have happened.  

I woke up on Sunday morning, with a lot of pain in my feet. There is always pain in my feet but for it to be that noticeable when I woke up was unusual. My right hand has been getting more painful and again on Sunday it was feeling quite numb too. When I say numb, I mean I can feel it because it is painful but it is a very alien sensation. Probably the closest I can come is when you have pins and needles and you are just getting the feeling to come back. There is a moment when the pins and needles feel really painful. Well imagine that and times it by 10. That is my best guess. 

I carried on through Sunday, feeling pretty low.

I woke up on Monday, only to realise that the whole of my right side now has this painfully numb sensation. My hand is worse and my leg feels like someone has wrapped a really tight band around my leg and is still pulling it tight. Really pleasant!

I decided to talk to my MS nurse, but she wasn't there so I called my GP and got an appointment for the early evening. He felt that it is a relapse. I hate that word! 

He felt that the best thing to do would be to try a course of steroids. He did the prescription and I got it filled. I got home and had a look at it but realised that this was a very low dose of steroids.

Usually for a relapse they prescribe either steroids by IV, which is a three day course of 3 infusions 1000 mg a day. Total of 3000 mg. They sometimes prescribe oral ones, which is a five day course of tablets 500 mg a day. Total of 2500 mg. The ones the doctor gave me yesterday was a course over about two weeks but the total was only 800 mg. 

I decided that I would try and get hold of the MS nurse again, before I started the steroids and luckily this morning I managed to speak to her. She had a meeting set up with my consultant this morning so was going to speak to him and then get back to me. 

I spoke to her again this afternoon, but I am so upset and frustrated.

They want me to have an MRI scan. They also want me to have steroids but IV ones. They can't guarantee anything because quite often I have not had success with steroids. The nurse is going to book me in but said that it might be the end of March before I have them. She will see if there are any cancellations but no promises. My consultant is going to do the referral for the pain clinic but again it all takes time. 

I am upset and frustrated because all these things are in the pipeline, but what am I supposed to do today, Now??

The pain isn't going away. My MS nurse said to stay positive because things do get better. That is fine and I understand that but it doesn't help me get through today. 

I know I sound like a right little drama queen and I don't mean to, but this is one of the sides to MS that people try to hide away - I know I usually do. 

I don't like people seeing me like this but I have to let it out somewhere and I decided to do it on here today! How else do you get the full picture. I told you sometimes it might not be pretty. 

I am doing my best to stay positive but it's pretty difficult when I am in pain and have these alien feelings all over my body.

I have also realised that with my singing taking off again, I have eight gigs over the next six weeks, talk about diving back into it!! Along with work, of course!

I am determined to do it too, please don't tell me I shouldn't. 

I have waited a long time to get my confidence back and to feel the pleasure from singing that I am now getting. Yes, I am nervous about the concerts but not in a panicky way. I am excited and looking forward to them. I am not stressing out about them as I thought might happen.

It's typical, I feel good about things in my life, I have an amazing husband, we have two gorgeous cats. I am singing again and then wham, a relapse. 

Welcome to the wonderful world of Multiple Sclerosis!

XxXxX

 

I thought Friday was a bad day............

....................but yesterday and today have been even worse.

My pain, is being a real pain. 

I went into work yesterday and it was tough going. But I managed almost my whole shift. My hands were so painful though, and by the end of it, I have to admit, I was in tears. I was a little frustrated because I think the managers thought that I was upset at not being able to complete my work but that wasn't the issue at all. The reason I was upset, was that I was in so much pain. But when you have pain that people can't see and is very difficult to describe, then it is hard to get across the fact that it is causing such a problem. 

I woke up this morning and the feeling in my feet was particularly unpleasant. It was a kind of burning pain, combined with the numb, tingly, pins and needles sensation. I can tell you that it makes walking very tricky. And very uncomfortable. It makes no sense to me. How can my feet and hands be so painful and yet have this numb sensation? But that is MS for you. 

My right hand is feeling horrible today. The fingers are very numb and tingly, but with pain. In my left hand I get specific pain, in my wedding ring finger. It is like a shooting pain, that works it's way right through the finger. 

These feelings in my hands used to be intermittent. My right hand pain wasn't too bad and my left hand pain would come and go. Now though, my left hand pain comes nearly everyday and my right hand is pretty persistent. 

But tomorrow is another day and I am hopeful that I will get a good nights sleep, that will set me up for a good week. Things are going to start getting busy over the next few weeks with singing gigs. I am excited, scared and looking forward to it..............I think?!! My idea is that being busy will take my mind off the pain. And you never know, I might get my pain clinic appointment.

I'll keep you posted!

XxXxX

Not a good day :(

It wasn't a good day today. 

I can't quite put my finger on why, but I was very tired and had a lot of pain. 

I also had an issue with my pain relief patch. It was due to be changed today. It has to be done at the same time and the same day each week. I did it just before I started work, which has been fine for the past three weeks. But today after I had put the new one on, I came over feeling dizzy. Almost like I was going to pass out, although that is something that I have never done. 

I decided to try work as I was already at the store anyway. With hindsight, of course, I think it probably wasn't such a clever idea, but I needed to at least try. I managed to stay on the checkout for a couple of hours, which was quite an achievement. But I was feeling worse as the time went on. I asked if I could get off the checkout, which I did. I was accompanied upstairs by a colleague, who wanted to make sure I didn't pass out on the way - Thanks Eileen! After sitting down for five minutes, I decided that I couldn't face going back down again, so I asked if I could go home. That was fine and as Martin was picking me up anyway, I didn't have to wait long before he arrived. 

Once I got home, I got straight into my PJ's. There is nothing like settling down in your PJ's, knowing you haven't got to go anywhere else for the rest of the day!! I find it very comforting!!

I started to feel a little better, I guess the pressure I was putting myself under, trying to work, really didn't help.  You see, I know that now, and I can be quite honest about it now, but at the time, it is like a switch that goes off inside me, saying, I must at least try and work now that I am here! I'm not sure that it is such a bad ethic really!!

Anyway, it's work again tomorrow and rehearsals on Sunday, so I am going to bed soon. I'm ever hopeful for that full night's sleep where I wake up totally refreshed - I can dream can't I?!

XxXxX

PS: Hi Emma! You see a special mention just for you!! 

Strange day.

I have had a strange day today! 

It started off by the door waking me up. Again, it was the dustman needing me to move the car - it's getting annoying now!! 

So I was up much earlier than I had expected to be. I decided to stay up though. Martin was home today, it was a day off for him. It was good to have him around. 

I finally decided to bite the bullet and phone my MS nurse. I hadn't had any response from the emails I had sent so I thought it was about time I tried phoning. I hadn't wanted to talk on the phone because I knew I would end up getting upset, but I am at the end of my tether with lack of ideas to help with my pain, so I thought tears or not I needed to make the call. I was lucky in that she was in the office, so I was able to speak to her. Sure enough the tears flowed. I get so frustrated at getting upset because I feel so silly. I told her how I feel as though it must be me, I must be doing something wrong, because I have so much difficulty in getting any benefit from all the different medications I have tried. She said I mustn't feel like that because it's not doing me any good. It's hard though when the pain is constant, it really wears me down. 

Anyway, she is going to speak to my consultant and ask him to write a referral for me to go to the pain clinic at Torbay Hospital - my local hospital. It is over two years since I went to see a pain specialist in London. So she is hoping that within those two years, something new that I haven't tried might be available. It's worth a try! I am glad that I have spoken to her because at least now I feel as though something is in the pipeline of being done. 

The rest of my day was fairly quiet. 

Another of my passions, as well as singing, is making cards. I made my own Christmas cards in 2007 and from there I carried on making all sorts of different cards. I had so many that I decided I should try and sell them. Then I thought I could try and raise money for my local MS branch - The South Devon branch. Now I donate 50% of anything I take, to the society. I use the rest to resupply my equipment. It is something I enjoy doing, providing my hands aren't too painful. And now I have the added bonus of being able to give money to a great society. I made a couple of cards this afternoon, I found it quite relaxing!

I have the basis of a new blog - Amelia's Cards - which I will continue with. You can see what I can do, from these pictures. I will put more on the other blog though! I am quite prepared to send out my cards, so if anyone wants to buy any then contact me and I can sort it out. I am quite happy to make to order too. I did that for a friend at Christmas and it was a great success.      

Martin has gone off tonight, to a rehearsal for a show that he is in. He is playing Cornelius in a production of Hello Dolly in April. I love watching him acting and singing. I know I am biased but he is so talented and it fills me with pride to be able to say that he is my husband!! Talking of raising money, we are looking to produce a concert next year to raise money for the MS society, again. We have produced two concerts in the past, from which we have raised about £2500. As well as organising them, we sing in them too - talk about taking on a lot!! It is such good fun though and we have some really great friends, who give up their time and their talent to be involved with us. I am already looking forward to the concert in 2010, I should have my confidence back by then, from doing the Show Boat and How Apt performances! It is a good incentive!

It's a work day tomorrow so I will need to go to bed soon! I didn't get as much rest as I wanted today, but I am hoping that will mean I get a good nights sleep tonight...................here's hoping!!

XxXxX

Tired, cold and emotional, but Oh so grateful for the Internet!

OK, so I am not a happy bunny tonight! 

I am so tired, I am freezing cold and I think because of the previous two things I am emotional too!

I have been to work today. I have had some of my shifts changed. I am still doing the same four days, but on Wednesdays & Fridays the hours have changed. Overall I am happy with the new hours. It means I don't work so late on a Friday which was becoming a big issue and on a Wednesday I work earlier in the day so the shift is over. That is fine except the Wednesday shift is now three and a half hours instead of three. I know it doesn't sound much but that extra half an hour really takes it out of me. I am going to stick with it for a couple of weeks and see how I get on but I may have to cut it down again. I want to at least say that I have tried doing it though, instead of giving up straight away. 

Being a Wednesday today, I have done the first of my new shifts. It went OK and I stuck it out, but I am totally shattered now. I don't just mean I need a bit of sleep kind of tired. I mean that my body is aching, my eyes are heavy and my legs are like lead. I am really hoping for a good night's sleep tonight. Fortunately I have nothing planned for tomorrow, so it is one of my much looked forward to days off!!

So having had a whinge, I want to say how glad I am that we have the Internet at out finger tips. I am overwhelmed at the friendships I have formed in the last 18 months. 

Firstly with Face book, which is great to connect with old friends but also great for making new ones. I then came across Twitter, which has introduced new people to me. Then I decided to start this blog, which has opened up doors to more new friendships. Obviously all the friends I have made are important to me, but I am especially grateful to those of you who are sharing your MS lives with me and countless others. To be able to "Talk" to other people who are going through the same things, is something that is difficult to describe. 

I joined my local branch of the MS Society - The South Devon Branch - and I must say hello to all the members!! I became a member soon after I was diagnosed and they have been a great support throughout. But it is also really enjoyable, "talking" to so many of you out there. Not only all over the UK, but various parts of the world too. 

I am so glad that I started doing this blog, because, selfishly, I am finding it so therapeutic. To be able to write down what I am going through AND to get responses back, that mean I am not going mad & it's not all in my head, is great!

I want to thank each and everyone of you for just being out there. Knowing that there is always someone available to talk through the strange events of this disease is invaluable.

I told you I was feeling emotional tonight!!

XxXxX

Emotional time

This weekend has been an emotional one for me - not MS related. So it is quite hard to say how I have been feeling. My pain has been very acute, but I have not been sleeping that well, so I guess it is all tied in. 

It was good to have the four days off work and actually the thought of it tomorrow fills me with dread, but I know once I am there, it will be OK. I am saying all that with fingers firmly crossed of course!

I am, once again, trying to focus on the positive things. I have a rehearsal tonight for the Show Boat concert. I didn't make it last week so I am definitely going this week. I also have rehearsals at the weekend for the How Apt group. Combine all that with work too and for a person with MS, I really am quite busy! 

I look at all the things I do and I amaze myself that I can do it all, but I don't see any other way of living my life. I want to work, because it gets me out of the house and communicating with others. It also gives me a sense of responsibility and I feel as though I am contributing to mine & Martin's lives, financially. I am also determined to be involved in my singing ventures. I have realised how important singing is to me and the sense of well being it gives me. It also allows me to get out of the house and be part of a group.

There are definitely days when I don't feel like it though! Those days where everything is a struggle and all you want to do is curl up on the sofa. That is why the days I have off are important to me. It's essential for me to rest. I often wonder if some people think that it is just an excuse for me to be "lazy"? A perfect opportunity to sleep in and just sit around, but if that were the case, wouldn't I be working full time?  

When I started back to work, that had been my intention. I had expected to be able to eventually take on a full time post, but how wrong I was. I manage twelve hours a week, over four days and that to me is a full time job. There are often days when I don't manage my three hour shift, which can be quite demoralising, but when I do manage it, I think to myself "what an achievement"!

It is so hard to explain to people how this illness can be so debilitating. But it has made me the person I am today. I am much stronger. I am learning not to push myself, but to do the things that I want to. Even if that means I need to manage my time so that I get the essential rest that I need (which, by the way, I am not very good at doing). I used to feel guilty all the time, if I had to say no to doing something and a lot of the time I would force myself to do it. I do still get the guilt, but I am trying to put my well being first. 

That's it! I am not used to having to put myself first! But with MS it comes with territory!

XxXxX

Questions & ideas!

It's March 1st and we have had a lovely day today weather wise, could it be that spring is nearly upon us? It's amazing how a bit of sunshine can change a mood. 

Does good weather improve symptoms? Does a better mood improve symptoms? Of course it must have an effect of some sort. 

I find that I don't feel so down, but I don't find that my pain improves. Maybe I am just unlucky, in that my pain appears to be pretty aggressive, or maybe I just don't handle it that well. That is the issue with pain, how do you measure it from one person to the next? I would say that I have a high pain threshold. I can deal with quite a lot before I get irritable, but when it is constant pain, it becomes very wearing. 

I tend to have a problem with the cold and with the heat! I need it somewhere in between! When we had our cold spell earlier this year, I suffered really badly. I would get chilled right to the bone, and find it very difficult to get warm again. But also in the summer, with the heat, the pain can be unbearable. My hands will go bright red and swell. They become so painful, like someone has slashed them with razors. It doesn't happen every day though. There never seems to be a trigger and some hot days they can be ok, so does that make the heat an influence or not?

My feet are constantly painfully numb and have been ever since my symptoms started in 2002. Then when I had a major relapse in 2003, my legs went. I couldn't lift them up or control them and that is when I started using crutches. I did change to sticks at one point but I am back to the crutches again. I find that they give me more stability.

It can be very off putting when you can't feel where your feet are. I guess that is why I use the crutches. I am certainly more confident with them and I am able to walk more quickly with them. I had a few falls when I have been out, before I used crutches, where my legs would just give way and I would fall. So I think it is a confidence thing too. I would rather use the crutches than risk having another fall. 

I often wonder to myself whether I should be using them or not. I wonder whether I am just being lazy? I generally get around my house without the crutches but only because I know where everything is and I have lots of things to hold on to. But it does make me question whether I could manage outdoors? 

Then there came the question of a mobility scooter. It took me a long time to even consider it and it was only when we went on a holiday to Florida and I used them there, that I realised how much more it allowed me to do. I was lucky enough to get a grant to purchase one last year. I have a portable one so that we can put it in the car. I still have a hang up about using it, but it is getting smaller with each use! Again, I couldn't get this idea that I was just being lazy, out of my head. But the more I have used it the more I know that it is an energy saving aid. It also helps me with not being in so much pain. 

I tend to use it to get me into work. It stops me having to get the bus which involves a fair bit of walking, where as using the scooter takes me from my door to theirs! 

Yes, the above picture is my baby, it is now covered with Me To You stickers!!

I still don't use it in town etc, which I should really. I would rather struggle and be in pain and exhausted than quosh my pride and just get on and use it!! What am I like??? 

While I am writing this I know how silly I sound and I am thinking I just need to get on and use it without thinking about it so much! 

I shall do a future post about my car, now that is something I would be lost without!

XxXxX