Hi Jayne

[Tommie]

How are you doing? Did the transfusion help at all?
I have been on Anaresp once a week for about 5 weeks again, I was on it and my RBC shot up so the hospital stopped it for a few months. But then my RBC went down to 9 so back on treatment. But now it's creeping up again so I have notified the nurse. The treatment does not help with the exhustion. That seems to get worse.

We went to my husbands Christmas party Saturday night, as he works for the Fire Service ( not a firefighter), I felt so tired but went well all those handsome firemen! I have paid for the late night, slept all afternoon and evening then all night. Work was tough today!

Well the big day is nearly here, presents wrapped etc. can't wait to see the little grandson's faces when they open the presents.

I hope you have a good Christmas and don't get too tired. Do you have some help?
I have a hospital appointment in London begining of January, going armed with lots questions!
Take care Jayne

[Jayne]

Hi Tommie

Thank you soooooooo much for asking after me. I'm sorry, I know I have been a little bit quiet lately on here but I am fine.

Well the transfusion certainly seemed to help. I had it on the 1st Dec. It didn't kick in straight away but I had a fabulous weekend with friends on the 10th and 11th and around that time I was pretty energetic! We have just had a our Christmas weekend with Martins parents and I am really sad to say I just 'flopped'!!! On Saturday (which was our Christmas day) I got up at 10, 'did' pressies and went back to bed at 12 until 3pm! I felt quite embarressed. It was my lady time of the month (sorry men friends/readers) and I think that contributed a lot to my lack of energy as I am starting to feel a bit better now. I am back with my Professor tomorrow to discuss my future options as the transfusions are only a short term solution for me. I have a feeling we will 'go' for the ATG horse rather than for a stem cell transplant but I will update you after tomorrow. I feel like I would like a 'top up' before Christmas but time is running out.....it is also my birthday on Thursday and as previously mentioned I have my close friend staying with me from New Zealand. We have been friends with each other since we were 13 and were bridesmaids for each other etc. So I dont know how I will fit one in, but I will if the Prof agrees.

I am ready for the big day. Today is my last day at work, yippeeeeee. I have my food shopping coming tomorrow. I am quite organised and not stressed. Christmas dinner is only like cooking a roast dinner which we have frequently, I love baking as does my daughter, she has requested a chocolate roulade and we have Christmas pud made my mum in law so nothing to stress about really! We just have my mum and dad coming to stay, which is lovely. We have a really good time with them and my Dad just makes us all laugh! They only live about 8 miles away but they will sleep Christmas night.

Exhaustion really is a problem, isn't it? And when we are at our lowest it seems so difficult to get back to feeling 'bouncy'! I think you/we just have to rest when we can. I go out and do things that I know will make me feel tired, but in doing those things I feel normal. My husband sometimes says "you shouldn't be doing that, you'll be tired" and I respond by saying "if I am tired I will sleep but at least I have had a good time" and who knows I may have felt tired anyway, so best to feel tired about having done something. Wow, I hope all that makes sense!! Although all that said, I cant be bothered at the moment to do anything, ho ho ho! I am going out for an indian tonight with my family and my mum and dad. At this moment in time I want to sleep, but I know once I start getting ready and once I get there I will be ok.

When the firemen come to work to do a yearly check on our site it is hilarious, cos all the girls take it in turns at going to the loo or finding some excuse to walk through reception - amazing what a man in uniform does to a girl! Lucky you. I married a Royal Marine, phwoar he looked rather dishy in his uniform. He isnt in the Marines now but he still looks rather phwoar!!! Ha ha, he would love it if he knew what I had just written.

I hope you have a lovely Christmas. Children really enhance Christmas and I am sure your Grandsons faces will be a picture! Enjoy, have a fab time but rest when you can. Try not to let our horrible disease spoil a magical time.

Take care,
Jayne x

[Sarah Reakes]

Hi Jayne and Tommie, and Chris and Janet and anyone else who is reading this.

I do understand what you mean regarding your feelings of tiredness, but like you Jayne, I feel tired whether I just do the normal things or not, so it seems even more important to try and do as much as possible so that you feel you've earn the right to be tired and achieved something at the same time! This time of year seems to be even more demanding and you seem to get swept along with all the things that need doing. Today, I've just baked some fruit cakes (my lot don't like the traditional Christmas cake), a victoria sponge and made some lemon curd and I really am feeling tired but at least I've got something to show for it. However, I do find I have days when I don't seem to achieve quite so much - I think it's the boring task of washing, ironing, cleaning etc, menu planning, that it is difficult to get the motivation to do them with much enthusiasm.

With the weather being so foul of late, our two dogs were becoming harder and harder to get clean following their daily walks, (despite daily hosing down) and so as a Christmas treat they went to the doggie parlour for a shampoo and set yesterday, and boy do they look and smell sweeter - and I'm sure they know they look great as they have a definite spring in their paws.

Simon's daughter Sarah, and her family - she has three girls - are coming to stay at her Brother's house (he is going to Ireland to stay with his wife's family) which is near to us and we are spending Christmas day with them plus my daughter Nicola, which will be nice. The catering is somewhat complicated as quite a few of them are vegetarian but we will still have the traditional bird and trimmings plus a wide selection of other dishes.

We have booked to go to our apartment in Ibiza on 26th January for ten days. We haven't been there for three years as it has been let out, but the tenants have since left, and unfortunately left it in quite a poor state and so we are having to go out to replace some furniture and bits and pieces and generally check it over. Thankfully a friend of our's has been cleaning it up for us over the past few weeks so hopefully it will be in a much better state by the time we go out. We had tried to sell it back in 2008 but of course the property market collapsed due to the credit crunch and so like so many people, we will just have to sit it out. As we haven't had a proper holiday for a couple of years, we are really looking forward to going - the Island is particularly beautiful in Jan/Feb when the Almond Blossom is starting to come out and of course it is so quiet at this time of year. It isn't as warm as the Canaries but by day it is very pleasant and sunny with temperatures at around 15-18 degrees and lovely blue skies but it does go off quite chilly at night but I really don't mind that.

Anyway, enough of the chat. I just wanted to wish you all a Very Happy Christmas and New Year and I think the mantra for us all is that we must all try to remain as positive as we can in coping with our various forms of mds. There is no doubt that this Forum does give hope and inspiration to so many mds patients and personally I wish to thank those of you who take the time to put out regular postings as it clearly does help.

Take Care.

Sarah xx

[chris]

Hi Sarah

Hope you have a fab Christmas - sounds yummy already and with the newly-fragrant dogs around what could be nicer!

Also hope you have a lovely break in Ibiza - go easy on the clubbin' - and that the apartment isn't in too much of a state so you can relax a bit and enjoy the bit of extra warmth!

Festive wishes

Chris

[Jayne]

Hi All

Sarah, Ibiza in January sounds wonderful. I've only been once when Matt and Jess were babies, we hired a car for a couple of days and it is a beautiful island. I hope your apartment is not as bad as you think.

I hope everyone has a lovely Christmas.

Jxxx