Tuesday 12th -- hubbies 49th birthday!!!

When I read my entry for yesterday I realised just how low I was. I put it down to absolute fatique, frustration & downright loss of self-esteem. This is the punishment I'm dealt for having had a [brilliant] day out. I have to suffer 2 or 3 days of fatique if I do too much, which was clear that I had done on Saturday as Pauline picked up on it, bless her cotton socks. I hate to pester people or ask for help as I've always been so independant before I was struck down with this awful syndrome. The problem is people cannot see it - if I had my leg in plaster, for instance, people would be sympathetic & understanding; however, I don't have any particular outwardly obvious signs, except that I walk [small distances] with a stick. I view myself as pathetic as I get so upset when I get angry at my illness & how it affects my daily living. As I said yesterday, I've lost so many friends through this illness because I'm not the fun & confident person I used to be. Did I ever 'say' what a friend of 30 years + said to me? Well, I see my friend every week. She comes to me as I can no longer get to hers. She refers to be as "being on drugs" & continually refers to everything I say as being due to the "drugs". One day when she came she hadn't even sat down before she said to me "Your teeth are all yellow" ---- yes, she did say that!!! I was so taken aback that I couldn't find an answer. Now, before she's due to come I scrub my teeth for so long that my gums bleed (I'm on Warfarin - a blood-thinning tablet). I also chew chewing gum that's supposed to help with teeth cleaning as I drink herbal teas which, apparently, affect the tooth enamel. People whom I've told about what she said cannot believe she said it - even my counsellor was amazed that a friend of so many years could come out with such horrible things. I know it's because she can't cope with me being like this & wants the old Gill Baker back. We used to go out for days, shopping at Eastbourne, Hobbycraft & other places. Now we don't go out anymore.
This is how my illness is "punishing" me. I beg of you all, I don't want to be like this, I'd rather be independant, have my wonderful job with excellent pay as I'm well-qualified and not have to worry about how far I can walk before I'm bent double, if I'm going to find a loo in time before I pee myself, and to be able to hold a proper conversation without forgetting simple words or forget where I am in a sentence. I'd love to wake up feeling fresh in the morning, to be able to make plans to do things that day like going to the shops by my self. I don't want to be dependant on others. I want Geoff to be my husband & lover, not my carer having to clean me up when I have days in a row where I'm totally out of it & unrousable. This illness affects the whole family. My girls, 10 & almost 12, panic now if the word 'hospital' is mentioned as they fear that all that happened in June '06 will happen again, and maybe that I won't be so lucky next time. This has been said to me by my 10 year old. She's taking First Aid courses after school. She told me it was so that if something happened to me she could do something. A child of 10 shouldn't have that worry on her shoulders. I feel so guilty when I'm not having a good day & I'm in a lot of pain and get cross with them if they are giggling & being silly. They are girls, girls giggle, but I'm taking away that freedom they should have at their ages. They aren't children for long nowadays & I've taken away those special years. We talk together at length about how my illness affects them, they say "it doesn't matter mum", but it matters to me. It even affects my poor little Westie, Rosie. I can't take her out for a walk anymore & I have to rely on my mum, who comes every Saturday to do my ironing, & a friend from church to take Rosie out for a walk. Yet she is so protective of me & knows when things "aren't quite right" and lays close to me.
My hobby, scrapbooking, is my lifeline. It's cathartic. When I'm busy constructing a layout my illness goes to the back of my mind. My illness even affects this, as I demonstrated yesterday. This morning I looked through all the layouts I did on Saturday. They are mind-blowing. I've proven that I can follow instructions, eventually. Now all I have to do is complete the layouts before attacking that huge sheet of chipboard to make circles for the album. I understand what I'm supposed to do, it's just putting the instructions together. I won't give up as I said I would, that's defeatist.
I will not allow my illness to prevent me from doing something that I adore doing. I'm sorry to all those whom I "download" my frustration onto. It's just that you're there for me & I really do appreciate that. One day I'll be able to do the same for you. I've given my whole life, professionally, to others; now the tide has turned & I have to accept that. To try & fight it is a waste of energy. I need to focus on the positive aspects of my life -- my girls, my son & eldest daughter, my grandchildren, my husband & my special mum, bless her. I also make a point of saying "I love you" to my children, grandchildren, husband & mum, every day. That's special to me. I just get a grunt when I tell my 27 year old son I love him!!! I'm also grateful to everyone who have been there for me, and still are, those who ask Geoff how I am, those who phone on the off-chance to see if they can pop round. Of course you can, anytime! Anything to ease my loneliness... I thank God for all those good things He has given me, rather than blame Him for this dumb deal I've been dealt. It's not a punishment from God, it's life. Now I've said it!!!! I'm off to finish a couple of layouts from Saturday.
Bless you for reading this.