Thursday, 30 April 2009
This is just a quick note to say that I won't be here for the next week.
At last our holiday has arrived!!
I'm sure you are all aware of just how excited I am about this holiday. We are traveling tomorrow and pick up our boat on Saturday. I am so happy that it is finally here. It is just what we need, to get away and get some serious relaxation, with beautiful scenery and great company!
I am experiencing a few problems with my MS, but having this to look forward to has actually made it easier to cope with the pain and numbness etc. I am not going to let anything spoil our week and the type of break that it is, means that we won't be rushing anywhere!!
Of course we will be taking lots of photos, so I will be posting them on here when we get home.
So I will blog again soon,
I hope everyone stays well.
Love & hugs
PS Thanks so much for the awards, I will post about them when I get back - I promise!!
Friday, 24 April 2009
Wow, where is the time going?!
The last week has been so hectic, mainly for Martin more than me. He is busy doing his production of Hello Dolly this week. But I seem to have been really busy because of it too! I went to see it on Monday and I know I am biased, but it is a great show. And of course Martin is fantastic!!
It did make me realise how much I miss doing big shows though. I suppose because I know that I would never be able to cope with all the rehearsals, let alone the week of the show, so I know that a big show is out of reach for me now. As a general rule, I don't feel self pity, or feel sorry for myself, but I do feel a little frustrated that something I really love doing has been taken away from me.
But looking on the positive side. I am involved in some gigs with How Apt. We have one coming up in May, then we have our River Dart trip in August, so there are things to look forward to. And at least I am performing again, in my own special way!!
Work has been interesting this week. I have been able to build myself up and on the whole I am managing my shifts at the moment. Although having said that, I did come home a little early tonight!
I had an appointment on Monday with an Occupational Health Advisor. One of my managers had organised it for me because he felt it would be good for me to talk to someone and see if there is anything else they can be doing to help me. My manager was worried about me because he knew how much I was struggling with pain. I felt quite chuffed that he had noticed and wanted to do something to help me. That meant a lot.
We actually had our conversation over the phone, but it was a really productive meeting. She made me feel that at last someone is there looking out for me. She said that they will be looking at trying to help me stay in work for as long as possible. That was just what I wanted to hear because I had been worried that there would come a point where Asda would say that it isn't worth me working there any more. She did say to me that there will come a time where I won't be able to work any more but that they would be there to help me through that. I don't want to think about that yet though!
I thanked my manager afterwards, because I felt it had been a really positive thing for me to speak to the advisor. It had lifted a weight off my shoulders and I didn't feel like I was alone battling everyone to keep my job. It may only be twelve hours a week but they are an important twelve hours to me.
As far as the MS goes, I am still struggling with my symptoms. My right side is still numb and I am still experiencing a huge amount of pain. But it always helps to have something planned to look forward to. My holiday, which is now only a week away, has really helped to keep my spirits lifted. That is why, for me, it is important for me to have things in the pipeline. It is the little things that help to win the psychological battle against MS.
I am like an excited little (or maybe not so little) girl at the moment. Counting down the days until we go away. The thought of the relaxing sound of the canal boats motor as we navigate our way through locks, lift bridges, swing bridges and two aqueducts. It's going to be heaven!!
Friday, 17 April 2009
I got up at a reasonable time this morning.
Which my Dad promptly took the mickey out of me for. He knows that I generally can't get up before about 10am/11am. So for me to phone him just after 9am was a bit of a shock for him.
I had a shower, which I found a bit of a struggle. I have been told that social services would be able to sort out taking our bath out and putting in a shower with a seat for me. I am finding it harder and harder to get my legs over the bath. I have a bath seat so I am able to sit down but I still have to stand to get under the water and wash my hair etc. It's probably worth talking to them about it. I just feel guilty that we need it, but we couldn't afford to do anything about it at the moment and there is going to come a time when showering is going to be really hard work. I didn't realise keeping clean could take so much effort!
I then stood around while Dad cleared our front garden of a load of rubble that was in the way. I felt guilty then too. I hate watching other people do things which I should be able to do myself. But Dad wouldn't let me help.
The trouble was that because I had had my shower, which involved standing and then I was standing about with Dad, my poor legs were in a right state and I still had work to contend with.
The front garden is looking great now though. I have some pictures which I will upload on here.
I did manage to complete my shift at work although I was really tired. I thought at one point I wasn't going to be able to keep my eyes open. I kept yawning too, which is not good in front of customers!! I have another shift in the morning too, but including that one, I only have seven more shifts before the holiday - yay!!!!
Here are some pictures of my pots, including a couple of Kit Kat, who really wanted to help with everything and when that wasn't possible she decided to play hide and seek under my wheelbarrow planter!!
Isn't she just adorable!!
Wednesday, 15 April 2009
I have had a couple of bad days and felt pretty fed up.
Yesterday, I woke up and ended up coming down stairs to the lounge. I pottered about doing a few things but I could feel that I wasn't right. I was suffering badly with fatigue and that was bringing me down. I was also in a fair bit of pain, which was just frustrating. I spent the day curled up the sofa sleeping on and off for most of the day.
This morning, I got up and had to get ready for work. I still didn't feel great but thought I would give work a try and see how I got on. I managed to do three hours only finishing half an hour early. I was quite pleased about that and I felt that the shift had gone well.
I picked up a little bit this afternoon. My Dad came up and helped me sort out a couple of my pots that were full of weeds in my front garden. We were also talking about the holiday and that always puts a smile on my face.
I am just annoyed at myself for getting so down. It's not good for me and it's not fair on Martin. He is the one who gets the brunt of my misery and I feel so guilty about that. It's not like I don't know that there are going to be days where I am going to struggle, and if I'm honest, those are more frequent than I would like. My point is that I feel as though I shouldn't be getting down about it because I know it is going to happen. It's a vicious circle! I'm sure I will snap out of it soon - or at least I hope so!!
Martin is involved in a production of Hello Dolly at the Northcott Theatre in Exeter next week. There was a piece done about it on our local news and Martin can be seen and heard singing on there!! I was so proud of him. If you want to see it, here is the link!!
We went for a lovely walk on Easter Sunday. Well I didn't walk, I used my mobility scooter!! It was a beautiful day and we took some lovely pictures up at Exeter canal. So I thought I would include a few on here for you all to see.
Monday, 13 April 2009
I went into work this morning and am very pleased with myself.
I managed to survive my three hours and fifteen minute shift, even though I felt pretty rubbish. I have got a very sore ear, which for the last couple of days, I was convinced there was a spot in it. But I have come to the conclusion now that it may be an infection :( It is very painful and is now very red around the ear. Through my shift this morning, I also realised that my hearing has gone funny again. So guess who is going to be off top the doctors again tomorrow.
It is a real drag to have a dodgy immune system, I never really suffered with infections and things before I was diagnosed!
I am disappointed to say that I really don't feel that the steroids have had much of an impact on me. The numbness on my right side is still there. Not to the extent that it was a few weeks ago so I guess that is a good thing. But it hasn't gone and I really thought after two lots of steroids it might have done. I don't know why because I have never had success before but ever the optimist I always believe that this time will be different.
I actually realised something the other day. I know this sounds silly - it did when I said it to Martin, but I realised that I am ill. Obviously I have known about the MS for over six years but I have never really thought of myself as being ill. The other day though, I was sat having a quiet moment and it suddenly dawned on me. I have this illness and there isn't a damn thing I can do about it. It was a bit of a shock to come to that conclusion. How daft is that?!
We were supposed to be doing our How Apt gig on the River Dart on Saturday, but we have postponed it until August 1st. There are several advantages to that. We have more time to rehearse and hopefully in August we will have lovely weather and it will be light for longer. Of course, now that we have had a beautiful weekend, August 1st will bucket it down with rain, you just watch!! We had a rehearsal instead on Saturday, which was good fun. The next performance we have is in May at a local theatre. We are the second half of the evening, with the first half being musical theatre students doing a showcase. The second half will then be the professionals ha ha ha!! It will be good to get in another performance and I am looking forward to it again. We will have had our holiday by then, so I should be all refreshed!!
I have managed to get out in our front garden over the past two days. Well I call it a garden but actually it's patio both front and back. We just couldn't cope with a proper garden. So we have lots of pots that I am now filling with plants. It is starting to look quite pretty. I will take some pictures tomorrow! I am really not very good at keeping plants and flowers though. I forget that they need water to keep them going!! It's a shame because both my Mum was and my Dad is very good with plants and flowers. I wish it had rubbed off on me!!
I hope everyone has been able to make the most of the long weekend, I think we have, although with doing the garden, my body is aching from head to toe now! Why do I always tackle these things thinking I am super woman??
Sunday, 12 April 2009
I hope everyone is having or has had a lovely weekend.
We have been very blessed with a beautiful day. The sun has been shining and we have really enjoyed it.
I have surprised myself for not writing my blog over the past week, but I am glad to say that my Dad has arrived home after being at sea for the past couple of months and we have been catching up. I love having him home, he is very supportive of us and since my Mum passed away, last year, he has been much more understanding of my condition and very attentive.
We have been out for lunch today and then went for a walk along the Exeter canal. I used my scooter, which, I hate to admit was a great help for me. I have realised that I need a more powerful one though and so I am going to sell mine on ebay as it is still under a year old.
Dad is going to be coming with us on our canal holiday and I am not ashamed to say that I feel like a big kid - I am so excited about it!! I have decided that I am not going to take my scooter on holiday with us though. I think, although it breaks down, it is still a big machine and would just get in the way. I am sure that I will be able to manage and we are only going for a week. It would be different if we were going for a fortnight. 19 days and counting!!!
I have been back to work this week and all in all it has gone well. I have been able to do letters in the office on a couple of occasions, which has meant a little less time on the checkouts. I started out slowly on Monday, by only completing two out of my three hours. But by yesterday, I managed to do my whole three hour shift. Only ten more shifts before we go on holiday so another countdown for me to do!!
I must tell you all about a book I am reading at the moment. I found out about it through a tweet on Twitter and Martin very kindly bought it for me as an ebook, that I can read on our sony ereader.
The book is called, Life Interrupted, It's not all about me. The author is Chris M. Tatevosian. His website is http://www.lifeinterupted-nolonger.com/
I am about half way through the book and I am finding it very interesting. He is a gentleman who was diagnosed with Multiple Sclerosis when he was eighteen and he gives a lot of advice about how to try and prevent relationship breakdowns. Not only partner relationships but those with family members and close friends. It's worth a read!
Anyway, I hope everyone has enjoyed the Easter weekend and indulged in many Easter eggs!!
Hugs to you all.
Monday, 6 April 2009
Monday 6th April came round a lot quicker than I expected. When I told my manager that I was looking at this date to return to work, it seemed like I would be off for ages. Yet the alarm went off this morning and I was quite disappointed!!
I went into work feeling quite positive though and determined to give it my best shot. I was straight on the checkouts. I had hoped I may be doing some letters today but there wasn't enough space in the office. Actually I was glad that I was on the checkouts because it was good to talk to people. After all that is why I go into work!
I managed to do about an hour and a half, before I started feeling weary. Then my right arm started to feel quite weak and I was struggling to lift the items from my belt. So after two hours I decided that I had done enough for today. I could have dug my heals in and stayed but I am trying to be sensible! Having been off for over three weeks and with all the drugs I have had in my system, it would be unreasonable of me to think I could go back with no problems. So I decided that I would speak up and ask to go home. That was sorted out with no problems, but I was slightly annoyed that I was asked to do a return to work. I have never had to do one before, when I have been off work for steroid treatment. And it's not like they didn't know what it was for. I told them well enough in advance. I was also told that he is not sure whether it will go to an investigation, because I have had 4 periods of sickness within 6 months. I am not stressing about it this time though. If it does go to an investigation, there is nothing I can do about it. And I have my disability on my side. They knew about the MS when they hired me and they knew I was going to be off for treatment, so there really isn't anything to investigate!!
It is just annoying that they have to be officious. I can understand that they have these procedures in place. We are a big company and absence is a problem. But you would think that someone would have the sense to look at my case and see that I can't change it. Oh well we'll just have to see what happens over the next few weeks.
I have been able to come home and just rest, which has been good. I am not back in again until Wednesday morning so plenty of time to recharge my batteries.
Some good news this afternoon though. I finally got a phone call to say that our new sofa and chair have arrived at the store. We are having it delivered on Wednesday!! It will make such a difference to have a sofa that is easier to get out of. The seats are spring loaded - we won't know ourselves!! I can see me curling up on the sofa even more than normal!
Sunday, 5 April 2009
So I have been resting, like a good girl! (Not that it's done me any favours!)
But I'm still not sure that I feel ready to go back to work. The trouble is that I think there will always be a bit of me that doesn't want to face it, but I have to go back some time.
I am amazed at just how tired I am. OK, so tired is wrong. Fatigued is what I meant to say.
I am still struggling with withdrawal from the steroids. My body is still aching but it is getting better.
I am incredibly frustrated though as my right side is still struggling with the numbness. My right hand is still painful and very altered. I almost feel that it is as bad as it was before the steroids. It's hard because there comes a point when you get used to it. So how much has changed and how much is the same but I have become accustomed to it?
I was so sure that having two lots of steroids would be a positive thing and I would notice a difference. I am still hoping that with time I will get a benefit.
My fear is that the consultant won't be confident that further medications will work. So will I be left fighting this on my own again? There is so much going around in my head at the moment and it is driving me crazy. Why can't there be easy answers to this illness?
I realised today, that we only have 26 days before we go on our holidays. I can't wait! It turns out that we planned it just right and it will be a welcome break. We are going on a narrow boat on the Llangollen canal. How relaxing!! And be assured there will be many pictures uploaded on here when we get back!!
But before that, work beckons. Wish me luck for tomorrow and I will let you know how it goes!!
Friday, 3 April 2009
I woke up this morning, early 6.30am. I got up and pottered about because I didn't want to just lie in bed. But by 8.30am I was exhausted again. So I went back to bed.
I got up again at about 11.30am BUT I could have stayed in bed all day. Fatigue has really hit hard today. It's amazing how it hits and just how incapable of doing anything, I feel. It has stayed with me all day.
I say I got up but all I did was transfer myself from my bedroom to my sofa, where I promptly fell asleep again this afternoon.
My body is experiencing withdrawal symptoms from the steroids too. I have a really bad achy pain along the top of my back and shoulders. It feels as though I have done ten rounds in a boxing ring. Not at all pleasant.
The numbness feels quite prominent again today, which is disappointing. My right hand is struggling and the numbness up in my head is frustrating. Is this just because I feel so tired?
I had a call from work today and I have agreed to return on Monday. Am I doing the right thing? At this moment I am not sure, but I do want to go back and to be fair they have been very patient with me, so I don't want to take advantage of that. I guess I will just see how I feel over the weekend and if I don't think I can manage on Monday I will have to say so!
I have no plans over the weekend, which is how I wanted it. I just need to take it easy and keep resting. It's hard because I had the last infusion on Wednesday so in my mind I should be feeling better by now. And although I still need to rest, my head is starting to question whether I am just being lazy. Does any of this make sense??
Thursday, 2 April 2009
At last! I am out the other end of the steroid nightmare.
It wasn't without further trauma though. I arrived at the hospital yesterday morning at 9.45am, after being awake since 3.30am. So I was in a tired and emotional state anyway. I had a horrible feeling that the vein hadn't held out because I had experienced pain throughout Tuesday evening and during the night. We took the bandage off and immediately thought that it was unlikely to hold. The nurse tried to flush it but it collapsed straight away. Both his and my heart sank. And my tears flowed. I was so disappointed. Another two attempts at cannulating later before he got one to stay in my vein, but it bled like crazy and so was very sore. For that reason he set the infusion to go through slowly, to cause as little pain as possible. It was very uncomfortable and stung like mad, but I kept telling myself it was only for that one infusion and if I could get through that it would all be over. I have a lovely ray of colourful bruises on my arms now!
I left the hospital, eventually at 1.30pm. I got home and was just in a daze. I tried to chill out but I was aware that I didn't want to go straight to sleep because I wanted to be able to sleep that night. I kept myself going until about 10pm. I don't quite know how!! I was an emotional wreck too. I guess part of it was relief that it was all over but I was also full of drugs and feeling quite out of it, so I shouldn't be that surprised that my emotions are all over the place right now.
I did manage to get some sleep last night. It was an unsettled night but sleep did come and go. We had nothing to get up for this morning either so that was nice to just wake up when we were ready.
I am determined to make the most of these four days (before I return to work), just to look after me. I am not good at putting me first but I realise that I have had a tough couple of weeks. My body has been subjected to some hefty drugs and I need to give it time to absorb that. It is quite refreshing to be so sensible, but I do feel strongly that I have not done this in the past and I want to be able to say this time that I did all I could to get maximum benefit from this treatment.
I haven't yet felt any remarkable positive turnaround. I would say that the numbness has lessened but it hasn't gone. There is definitely still residual numbness. My hearing is better though, but the pain is still about. Maybe not so forceful though. I am going to give it some more time though before I give up hope!
Thanks again to everyone for all your support. This certainly is a trying time for Martin and I and it is great to know that everyone is out there routing for us. All the advice and encouragement is very welcome. It means more than I can tell you.
Love and hugs to you all.
Wednesday, 1 April 2009
............... and I apologise for that!
I had my oral steroids last week, which finished on Thursday. They had quite an affect on me but not a positive one! They left a very bad taste in my mouth, which meant eating and drinking became a chore. In fact my appetite decreased quite a bit. Not a bad thing really!! But it did mean that I felt pretty weak. They generally left me feeling pretty rough and under the weather. I am not convinced that they had a positive impact on my symptoms either, which is frustrating to go through all that and not get the benefit as well. The only positive was that my hearing in my right side did improve. So something positive did come from it!
Then I had my busy weekend!
We had our last two performances of Show Boat. They went very well, considering I wasn't feeling very good. Thursday's performance for me wasn't a good one. I didn't feel as though the quality was there and I felt that the steroids had effected my voice. But then the feed back I have had has all been positive. Martin even felt it was possibly the best I had sung it - go figure??!! Friday's performance, for me, was a little better and I think we all just enjoyed it, knowing it was the last time we were to perform it with the orchestra and an audience.
By Saturday I was shattered. It had taken every bit of energy to do those performances and then some.
I had my hair cut on Saturday, which is always a nice treat. It was interesting though because it made me realise that the numbness in my head and ear, on the right side was still there. I was a little disappointed. But happy with the hair cut! Nice and short, not difficult to manage!
I spent the afternoon resting, ready for our rehearsal in the evening for our Debut How Apt gig. The rehearsal went well. It was a chance to iron out any problems and just run the whole performance, something we had yet to do properly! Although we were all pretty tired by the time we finished, it was with an air of satisfaction that we could pull this off. And dare I say we were actually looking forward to doing it!
Sunday came and Martin had a rehearsal in the afternoon for his production of Hello Dolly. I stayed at home and just rested. I felt a little out of it. And I had an air of concern about me. But I didn't feel that it was about the performance. I realised that I was worrying about the IV steroid infusions that were starting on Monday. I had to push that to the back of my mind, after all I couldn't do anything about that and I wanted to enjoy our first gig!
It went really well and although the audience was made up of friends and family, we had such a positive reaction. It felt so good to be a part of it and to be singing again. It made me realise just how much I had been missing it. I had been in denial about that and I had lost all my confidence. I had even convinced myself that it didn't matter and I could live without it. Big mistake! I can't. I love the freedom it gives me to express myself. I love being part of a group who are all there for each other. Making a great sound and doing it professionally. May this continue for a long time!!
Obviously by the end of the evening we were all buzzing but I was also absolutely shattered. And then it hit me. There was nothing now in between me and the IV steroids!
I went to bed and got a little sleep. But I was nervous. I was nervous about the cannulation more than having the drug itself. I have had so many problems in the past with them finding my veins that I am ready for it to be a traumatic experience. Unfortunately Martin couldn't come with me as he has had to work all this week, so I arranged for a friend to be there instead. I didn't want to face this alone. And I am so grateful to Jeane for being there for me. I really needed that support. And we were able to chinwag, which made the time fly!
6 attempts it took for them to get the cannula in. They even got a doctor to try, but that didn't work. I was asked if I wanted to go home and try again the next day, but I decided that I was there and they may as well persevere for a little longer. It paid off because the last place they were going to try, it went in and stayed. It is in an awkward place on the edge of my right hand. But we have bandaged it up as best as we could and I have had to make sure that I don't do anything with it - no washing up, making the tea etc!!
So after arriving there at 9.45 am on Monday morning, we left at 2pm having had the first infusion. It knocked me out. I dropped Jeane home and came home myself. I just crashed on the sofa. I was suffering badly with the hot flushes. Sweat pouring off me. But the bad taste in my mouth wasn't as powerful as with the oral ones, so I am eating a lot better this week. I managed to get some sleep too, which was a bonus.
My concern on Tuesday was whether the cannula had held or whether the vein had collapsed and we would have to go through it all again. Jeane came with me again, thankfully. The nurse got the flush ready and I held my breath! It went through OK! I could breathe again! We put the infusion through slowly so as to preserve the vein for as long as possible. So we still didn't get out of there until 1pm yesterday.
I got home and crashed again. But only after I had had some lunch. It has been a welcome relief to be able to eat this time. I think that because with the oral ones the taste was so bad, I was concerned that these would be the same. I have always had that problem with the steroids. But flipping that around, I think because the oral ones were so bad, this seems very tame!
Anyway by last night my hand was becoming very sore and I was becoming very emotional. I just want it all to be over now. I know I only have one infusion left but it has left me knocked out and feeling pretty low.
Someone asked me yesterday whether I was feeling any benefit. I have to say at this point I don't really know. I think the numbness is not so prominent. But I will reserve judgement on that until I have had the full course and see where we stand then.
I am not due back at work until next Monday so I am looking forward to a few days of not having to do anything. Just recuperating. And I plan to do that this time. Quite often I rush straight back to work or I try and do something else with the time, which I know is not sensible. I want to come out of this knowing that I did all I could to feel better and that means giving in and resting!
As you can see I am writing this at about 4am, so sleep has eluded me tonight. I managed a couple of hours but rather than lie up there frustrated I decided to let Martin get a good night without me tossing and turning!
My hand is sore, but I am praying it will hold out for this last infusion. I'll let you know!