Wednesday, 25 March 2009
I'm sorry to say that I am on a real downer tonight :(
I had a really rough night last night, didn't get much sleep. The steroids are taking it out of me in ways that you forget when you come off them. I am experiencing a lot of pain, still, which is frustrating. I woke up at about 3am with horrendous pain in my hands and feet and the hot flushes are annoying. I spent the rest of the night just dozing, on and off.
So I know I am tired, which is obviously affecting me emotionally. But it is driving me nuts.
I have taken my fourth dose of steroids today and I have to say that I feel really sick and shaky tonight. And it is really upsetting me. I also know that tomorrow will not be the end of it, I have the three infusions next week to get through yet.
I have always said that I will not be one to sit here and wallow in my own self pity - so snap out of it Amelia!
How do we do that though? How do we not let this situation get on top of us every once in a while?
Unfortunately, Martin is out at a rehearsal, which I don't begrudge in the slightest. He has to have his distractions too. And I am glad that he has an outlet, where he can let go.
And just as I have written that, he has rung to say he is on his way home - my knight in shining armour!!
I know in the back of my mind that I am concerned about singing tomorrow night too and that is a big admission for me.
Oh well, tomorrow is another day. It is a day that will be full of possibilities. Martin has the day off work and we will do all we can to get me to the stage tomorrow night!
Big hugs to everyone out there and thank you for letting me be down with you - it has even helped lift my spirit!
Tuesday, 24 March 2009
So I thought I would update you all with a progress report.
I started taking the oral steroids and although I anticipated the awful taste, the hot flushes the nasty taste they leave in your mouth. You can't remember the full force of it until you are actually doing it again!
I had forgotten how much it affects my sleep. How the nerve endings seem to be racing in my body. And how everything I try to eat or drink tastes awful. The only things that I can manage are Lucozade and ginger biscuits! Big soup was a good meal last night! I have discovered that taking the tablets with the ginger biscuits, doesn't make them so difficult to actually take. The first time I had the tablets, I took them with water and they were disgusting. But with the strong taste of ginger, I don't really get that nasty aftertaste.
I am halfway through the dose, but unfortunately I haven't experienced any significant improvements. I wasn't really expecting too as I haven't had that much benefit in the past with steroids. Obviously, I am going to be having the IV infusions from next Monday so I am hoping that with two high doses within a short space of time, that things will improve fairly soon.
I have my MRI booked in for Friday. Martin is working but I have decided that I will go it alone. It's not like anyone can be in the scanner with me anyway!! I will be a big brave girl. It will give me a chance to go over all the lyrics for our first How Apt gig on Sunday!! I need the practice time! See always trying to see the positive in every situation!!
I am trying to make the most of this time and get as much rest as I can. It is a little difficult when my sleep is being disturbed as much as it is. But I am not doing much during the days, so I am doing my best!
I am supposed to be out tonight for a quick recap of the Show Boat stuff. I have decided that I just can't manage it though. I will be much better off using the time to recuperate, rather than pushing myself to rehearse something, that I know I can do. It would be good to see all my friends but I just can't face the punishment to my body.
From Thursday onwards I am going to be a busy bee again. I have the last two Show Boat concerts on Thursday and Friday. I have my MRI on Friday morning. On Saturday we have a rehearsal evening planned for How Apt. On Sunday evening we have our debut performance as How Apt. Then on Monday, Tuesday and Wednesday I have the IV infusions and all that goes with that to look forward to.
When I put it all down like that I am a little daunted by what I am taking on. Oh, well one step at a time!
Sunday, 22 March 2009
I have finally sung in public, once again, and it wasn't a disaster!!
In fact, I have had only positive comments and lots of encouragement. :))))))
Friday came and I woke up a little disturbed. I have been having hearing problems in my right ear, because it is my right side that has been affected by this latest relapse. But on Friday, I realised I was having problems with both the right and left ears. Inside, I was quite worried but I didn't want to show it, so I carried on as though everything was OK.
Apart from my hearing and being in pain, I felt quite excited about the prospect of singing again. The evening itself, went quickly. We weren't on until the second half, so about 9pm, but we had to be there early to do a sound check and get our head microphones. We are singing with a 40 piece orchestra, so we need the mics, to be heard!
Everyone involved did really well and we made a great sound - even if I say so myself!
My only concern, was whether I had sung mine in tune!! Having dodgy hearing is the worst thing that can happen when you are trying to sing! But apparently, all was well, and my solo was a success.
I must admit, that by the end, I was exhausted. The whole build up and anticipation had really taken it's toll. But mixed in with that was the satisfaction that I had achieved what I had set out to do.
I proved that even with MS, and also being in the middle of a relapse, I was able to do something I loved and I pulled it off.
I couldn't have done it without the constant support of Martin.
And, of everyone involved in the concert. They have all been amazing. Nothing has been too much trouble for them, they just want me to feel comfortable. That in itself, means more to me than anything.
We had our second concert last night, which too, went very well. Unfortunately, I stumbled over some of the words. According to everyone else, it wasn't noticeable. But to me (and Martin) it was obvious. It wasn't a major blip and I covered it up, but I knew I hadn't been perfect, so I was disappointed in myself.
Our next ones aren't until next Thursday and Friday, so I have a few days to relax now. Followed by our first How Apt gig on Sunday. www.how-apt.com I have a rehearsal for that tomorrow. I really need to make sure that I am confident with lyrics for that gig. I am involved far more with that one, as there is only five of us singing, so a lot more responsibility!
We have had some publicity for it already. Follow this link and this should take you to an article that was in our local paper.
Altogether I am very happy. It has given me the confidence to believe that I am capable & able to continue singing in the future.
From the MS side of things, I would be lying if I said it was easier than I expected.
It was and continues to be a struggle. But I figure, if I can do it while I am in the middle of a relapse, then I should be OK to continue doing it anytime.
My pain is still pretty bad and the tingly numbness hasn't subsided yet. I am taking the oral steroids and have my appointment for the infusions, which will be a week tomorrow for three days. I have also had my appointment through for the MRI scans, which will be done next Friday morning. So things are moving forward now.
I am making the most of this time now to rest. I keep being told that I need to listen to my body and ensure that I get enough rest, so I am trying to be a good girl and do just that! There is a first time for everything you know!!
Thursday, 19 March 2009
It's been a rough day today.
I have spent most of the day in bed. I had to get up and drop Martin down the road for a lift, but I came back and went straight back to bed. It was quite scary because I genuinely couldn't keep my eyes open. It is fatigue at it's worst and I have never had it this bad before. I didn't actually get up from bed until about half past two, but that was only because I had to!
The last couple of days I have be riddled with pain too. I'm not sure whether the pain has caused the fatigue or the fatigue the pain, or of course, it may just be MS!
Nothing much has changed as far as the relapse goes, apart from feeling weaker by the day.
So it's an early night tonight and more rest tomorrow.
I have a friend from work coming over for coffee, in the morning, which will be good.
And then it's performance day number one tomorrow night! The first time I have sung solo, in public for about 3 years! I am looking forward to it though.
So rest is vital and my bed is calling me back!
Hope you have all had a glimpse of the sunshine, that we have had here in South Devon today. Spring must truly be on it's way - hooray!!
Our little munchkin, finding anywhere she can to explore!!
Wednesday, 18 March 2009
Things are a bit tough today.
I woke up really early, in quite a bit of pain and that pain has been pretty persistent all day. I did go back to bed for about an hour and a half, but it wasn't enough. I am feeling really exhausted, which on top of the pain is making me feel quite lethargic. The right side of my back feels twice it's size today - I feel like a hunchback - no comments please!!!
I had a few things to sort out yesterday, like the steroid prescription. I think the pharmacist thought I had got it completely wrong, when I put in the prescription! But after a lot of explaining, she was able to establish that I did need 500 mg a day for 5 days! Obviously it had to be ordered so I won't be picking it up until tonight.
As far as the IV infusions go, I have had a call from the TAIRU unit at Torbay hospital, which is where they do the infusions. They had wanted me in next weekend, but as I have 3 concerts, Martin gently reminded me that the combination of steroids and doing anything just doesn't go. So we have arranged for me to have them from Monday 30th March for 3 days, because I have the oral steroids to keep me going. If I hadn't had the prescription for the oral ones, then I would have seriously had to think about pulling out of my singing commitments. I feel quite relieved that it is all sorted now and I can still sing!
It is frustrating that the resources aren't available to allow people to get the treatment any quicker. By the time I get the infusions, it will have been about three and a half weeks since things started going from bad to worse. That is quite some time to wait - or is it? Luckily I have the oral ones to take in the meantime, but this is my point about how do we get through now? Is this 'normal' for people to have to wait for treatment that works more effectively the earlier it is given?
Enough of the moaning, I have my appointment booked, I have the prescription ready to start tomorrow and I have my singing commitments starting on Friday and I will be there.
I know some people have questioned that I am still going to be singing, even though I am in pain and discomfort, but if I stopped doing everything because of my pain, then I wouldn't be doing much with my life.
Yes, it will be hard. Yes, it will be a challenge and yes, I will be in pain. I never said it was going to be easy. But that is what life is all about isn't it? I have too much to give in my life, to not at least give it a try. That isn't to say that I am not listening to my body. I am trying to be sensible - ha ha!
I am resting as much as I can in preparation for the activities at the weekend. I am not working at the moment because I have recognised that I was taking on too much. (You can all get back up off the floor now!!) And the fact that half of my body won't work properly, meant that I am unable to work satisfactorily anyway. It is disappointing because a part of me feels that I am 'giving in' to the MS. But the other part understands that I am actually doing what is best for my body. My head is such a conflict zone!
I have the final rehearsal tonight, with the full orchestra, for the Show Boat concert, which starts on Friday. I am a mix of emotions right now, but none of them are the terror I thought I would be feeling. I am actually excited, a little apprehensive and slightly scared, but not terrified! I have such great support from everyone involved in the event, that no matter what happens, I don't feel that I will be letting them down. So fingers crossed everyone!
I have to just add a note especially for my dear friend Jane Rowell and her family. Jane's mum sadly passed away yesterday after a battle with cancer. I lost my Mum a year ago on March 2nd and my heart goes out to her at this difficult time. When I was newly diagnosed, I remember Jane telling me that her Mum did reflexology. I never did take advantage of that, and I feel very sad about that today.
There are lots of people thinking about you and your family today, Jane. Martin and I are just two of them.
Monday, 16 March 2009
So Monday has arrived!
I did manage to get some sleep, which was very welcome. I got up, feeling pretty anxious. I felt that I had a lot riding on today. I ended up in tears in the shower. Everything was feeling so strange. My right leg and arm is getting weaker by the day. I was really struggling to wash my hair etc and drying myself was really painful. I needed a lot of help from Martin, which he gives me with no complaint. It is so frustrating though, being a 35 year old who needs help showering and dressing. Oh well, it gives Martin an insight into the future, when I'm old and grey eh?!!
Martin was with me for the long awaited appointment with the consultant. I am always glad when he is with me, not only for the support, but it is always helpful to have a second set of ears. Between us we have a chance of remembering most of what is talked about. I also believe that this illness is affecting both of us and not just me, so anything discussed should be discussed with us both.
I had documented my latest symptoms, in as much detail as I could and I was able to hand that to my consultant as I walked in. It meant that straight away, he had an idea of what I was facing, which I, and he, found very helpful. He said that between himself and the MS nurse, they both feel very helpless, as it is so difficult to provide answers to my problems.
We have come up with a management plan, for the next few weeks. I am to have IV steroids, whenever that can be arranged. He has also given me a prescription for oral steroids, so that if I am not able to have the IV ones until next week, then I can start with the oral ones until then.
I see myself very pumped up and putting on lots of weight over the next few weeks!
He has also said that he will arrange for an MRI scan to be done within the next two weeks. Then we can compare those with previous scans.
He has already said that he is sorting out the referral to the pain clinic, as that is their area and may have ideas that he doesn't know about.
Once the steroids and MRI are done, we will be in a better position to decide which direction to go next.
I am relieved that I have had the appointment and I feel that I now understand what is being done and why they are doing it. I should find out tomorrow when the IV steroids are on the cards, which will allow me to sort out if I am going to need to start the oral ones or not. At least a plan of action is in place, which I can act on as early as tomorrow.
That was one of the points that I was eager to put across to the consultant. It's OK to have this plan, but what is going to help me today, now? This is why he has given me the prescription, so that I can get started asap.
The pain is still as bad as ever, and with the weakness in my arm and leg, I am still in an enormous amount of discomfort. But I feel more positive, which is a good thing.
I also explained that I have started my singing again. He thinks this is a good thing! I am well aware that I will feel pretty rubbish with the steroids, but I will be at those gigs. I have a lot of understanding friends around me and they will look after me.
The important thing, that I am aware of at the moment, is that I need to rest. I am not very good at recognising that, or acting on it. But, I want to be able to do myself justice when I sing, so I will be resting as much as I can!
For those of you asking to hear my voice - If you go to the following website www.how-apt.com There are some demo songs on there from our group, How Apt. You can't hear me individually yet, but hopefully more tracks will be available over the coming months.
So onwards and upwards, tomorrow is another day......................... closer to my first singing gig on Friday!!
Sunday, 15 March 2009
Well, what a weekend!
It has to be said that I have struggled all over the weekend.
The tingly, numbness, is now throughout my entire right side, including my head and face. It feels incredibly weird and I am still in a large amount of pain. My right hand feels like it has been slashed with razors. My feet and lower back are burning and my face feels like the skin has been stretched over it, making my eye and cheek feel very uncomfortable. I also have very muffled hearing from my right ear.
I wasn't able to manage going into work yesterday. On this occasion I had to listen to my body. I'm not sure whether I shouldn't be doing that a little more these days. But I'm really not good at it!
I have written up my relapse notes, in preparation for my appointment tomorrow. I am really quite nervous about it. I know that sounds silly, but I want to make sure I get the result that I need from it. Ultimately that would be immediate treatment. This is one of the worst relapses that I have experienced and I just want some relief from it now - is that too much to ask??
I will update this, when I can, with news from the appointment tomorrow.
In the meantime, I hope you have all had a good weekend and that the week ahead is bright and positive for us all.
Friday, 13 March 2009
Another day, another symptom.
That's not strictly true. It is an extension of symptoms I already have.
The tingly numbness that started last week, has now spread. As well as being in my right hand and right leg, it has now spread up my back, up my arm and into my head. All on the right side. Then this afternoon, I realized that it has now gone into my face. It seems to be spreading by the hour.
I really can't explain how this feels. But it is very weird. The pain just on it's own was enough to drive me crazy, but now with this tingly numbness as well, I am climbing the walls.
My right ear feels as though it isn't there. Obviously it is otherwise my glasses would fall off! But because of the strange feeling around my ear, I also feel as though it is affecting my hearing on that side.
It's almost as though that side of my body feels twice the size it is. I have felt that with my legs before but not my head. I have just realized that it feels as though I have got a balaclava over the right side of my head???
I also feel as though my right leg is getting weaker. It feels like I am dragging it around - like I am dragging a lead weight around. It doesn't look as bad as it feels but it is very odd.
I have also felt, occasionally today, like these symptoms are in my left hand and foot. I am putting that to the back of mind though and pretending it's not happening. If it does progress, I will deal with it then!
I wasn't going to say this but I've decided that I am not ashamed to admit that I'm scared.
As I have said before I am staying positive and carrying on with as much as I can - this time next week, I will be in the middle of my first concert!!
But, what if this carries on like this. Obviously I am hoping that I will get the steroids soon and that they will have an effect. But I have struggled in the past with steroids not doing much for me. I have them each time, with the hope that this time it will be different, and yes, sometimes, things do slightly improve, but they never go away completely.
In the six years since the onset of my first symptoms, I have not had a single day where I haven't had those symptoms. Some days can be better than others, but they are always there.
What if these symptoms don't go away? Can I handle this pain, numbness and general strangeness of the change in sensations of my body? I guess that eventually I will get used to it, like I have with all the others, but I still find it scary.
I went into work again today. I am getting quite frustrated that they have this impression that I am just constantly upset. Yes, the last couple of weeks have been trying, but I am not upset about the amount of work I am able to do (or not). If anything I am proud of what I am achieving, even under these circumstances. They don't seem to understand that I am upset because of the pain that I am in. It's that favourite thing of, they can't see it so what am I talking about?
There is talk of me going in the office, permanently. On one hand that would be good, because I wouldn't be under so much pressure, but part of my reason for taking this job was, that it gets me out of the house, I am on the checkouts, so I have to talk to people. That for me is a pleasure. Do I really want to be couped up in the office all the time?
I am due to go in again in the morning, but I will have to see how I am tomorrow. If this numbness is still as persistent, then I'm not sure I will be able to handle a busy Saturday. Plus the fact that I am exhausted. Just signing in is taking up all my energy, then walking down to the checkouts, it's one challenge after another.
Anyway, one day closer to Monday. That's got to be a good thing!
Thursday, 12 March 2009
It's now two days later, from my pretty stressful Tuesday. I am afraid to say that the pain is just getting more intense. My right side is feeling more and more alien and I am getting incredibly frustrated.
On the positive side though, I did have a call from the nurse again yesterday and I have been squeezed into my consultants clinic on Monday. Hooray! I am relieved that I will be able to see him and discuss everything that has been happening. I am going to write it all down so that I don't forget anything once I get there. Martin has arranged the time off too, so he will be by my side. It is still difficult though, as I feel as though I am wading through each day, just to get me to Monday!
This pain is such a nightmare. I would like to think that I am quite a strong person. I look at the things I am trying to achieve in life and I feel that I am approaching everything in a positive manner.
The one thing that is driving me crazy though, is being told to remember that it will get better. To think of the fact that things will improve and it won't always be like this. I appreciate that, of course I do. But my argument is, that it doesn't help me now. I can stay as positive as I like but when the pain is as intense and as constant as this is, I challenge anyone to stay positive and cheerful 24/7. When the whole of your right side has this tingly, painfully numb sensation that is causing my hand to feel very weak - writing isn't easy at the moment - and my leg feels as though it is twice the size it is, how do you not let it get to you. I have this weird feeling with my feet and right leg too. It feels as though I have got a sock on or some tights on and I haven't taken them off for a while. Even though there isn't anything on them anyway. You can imagine me trying to take socks off that aren't even there!!
I had a rehearsal for Show Boat last night, it was the first time with the orchestra. I was determined to go because I wanted to make sure everything was OK with my solo. Luckily my solo is the fifth number so we got to it quite quickly. It went well and I feel more confident about it now. But once I had sung it, I had to get Martin to bring me home. I was exhausted and feeling very unwell. I had been to work earlier that day too which probably wasn't a great idea, but I had to go in and explain everything that is going on. They have sorted out me being off on Monday and are primed and ready, knowing that I will need the time off to have the steroid infusions. I was so exhausted by the time we got home last night though.
I guess this is where I have to manage my energy a little better than normal. But I have so much I want to do right now.
I haven't had anything on today, so I have been able to just relax and take it easy. I have work tomorrow though. I will give it a go and just see what I can manage. I have rehearsals over the weekend too, but the way I look at it is, that by keeping busy, Monday will be here quicker. I just hope I don't wear myself out too much.
I know I need to rest but knowing it and doing it is something I find difficult to execute!
Oh well, three days and counting until Monday. I just hope it will provide some hope for me!
Tuesday, 10 March 2009
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!
Sunday, 8 March 2009
....................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!
Friday, 6 March 2009
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?!
PS: Hi Emma! You see a special mention just for you!!
Thursday, 5 March 2009
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!!
Wednesday, 4 March 2009
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!!
Tuesday, 3 March 2009
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!
Sunday, 1 March 2009
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!