I’m taking the plunge and getting my first tattoo to raise awareness for Action for Me. I will be having the blue ribbon tattooed on my wrist. As this is my first I am nervous but think it is for a great cause. If you want to help, my just giving page is here. All money donated goes directly to the charity.
They also want to feature my story on their website which is great, once I have my tattoo done I’ll be sending them my pictures.
Yesterday I went to a ME support group for the first time. It was great talking to people who understand. Unfortunely my partner is not understanding so getting him to go to the next one with me.
Making comments that upset me. Saying I have to go to work (off sick until next week). I think he’s just worried about money. However if I keep forcing myself I’ll never get better and keep relapsing. Dr told me I need to reduce hours further, partner telling me I can’t and getting annoyed at me. This week I have been in bed most of the time. There are times I’m too tired to even make a loo trip and hold it in.
Last Sunday was awful. Tried making an effort for my son and took him swimming, not proper swimming just slashing about. I managed about 20/30 mins but my back was in agony and I was cold. That afternoon I was completely wiped out and couldn’t look after my son, managed to get an hours nap but not refreshed afterwards. In the end I had to call his dad to look after him. Got my partner to drive us to his house as I was just too weak. I was so upset on the way home in tears. I just wish that I could be a normal mummy. Feel so guilty. I have to accept i have this illness but it’s so easy to grieve who you used to be and its really hard when the people around you don’t understand.
Help me raise money:-
Today I had an appointment with the doctor and everything came back normal. So I have now been diagnosed has having CFS/ME I’m just happy that I now know what it is and I can learn to manage it. I am being referred to a CFS/ME clinic where they will help me learn to manage it and do pysio.
Just got a lot of books out from the library and now going to read up on it further.
Had a couple of rubbish days which why I not posted on here. Saturday night at 12am I had to take my son into hospital as his temperature was over 40c and not coming down, turns out he has a ear infection poor boy, we didn’t get home until 2:30 am so extremely tired after that.
No work again today, migraine came on and just wanted to lie in bed in the dark under the covers.
Managed to make myself crumpets for lunch. Still tired in the afternoon. Went to have a soak in the bath but my whole back screamed in agony so that didn’t last long. Needed to get out of the house so gone to Starbucks just two minute drive for a coffee and muffin for one. Sat here feeling sorry for myself and tired.
Feel like I’m letting my partner down. Sent my boss an email and told him the truth, he replied saying he’s sorry I’m having such a bad time etc. he was very sweet about it. that’s put my mind at rest a bit!
Today my partner took the day off so we could go to the cinema this afternoon. He treated me to a breakfast at a pub which was very nice. Then I had my blood tests. They are testing me for everything including coeliac/thyroid, FSH, Ferritin – everything. As I said before if they come back normal I will be diagnosed as having ME. Mentioned to the nurse the B12 injections are not doing anything for me, I still feel crap.
As strange and awful as it sounds I hope I am diagnosed as having ME at least then I know what it is that I have and I can then try and learn to manage it. When you in limbo you don’t know what to do.
I showed my partner the link I posted yesterday and this morning he said he now understands better how i am feeling (great) and asks me how many beans I have 🙂 .
Got home from the doctors and I just crashed! Really didn’t think I would be able to go to the cinema, but my partner took a day off for it so I got up and went. I fell asleep during the film! (It was The Avengers, not really my thing anyway! Sorry guys!). Went to pick up my son I had no energy but I was so excited to see him, I had a little surprise for him, a George Pig dinosaur, he loved it. It made my day seeing his face light up and saying dinosaur ‘roar!’.
Partner made the dinner tonight which helped a lot. This evening I am shattered, sat down and watched something on telly. I really really want to sleep. Not looking forward to work tomorrow, partner says I will have to go in regardless. I am so scared about what my boss will say to me and I don’t know what to say to him?!. How to you tell someone you’ve been ill when you look perfectly fine. There’s no physical symptoms. He did ask my partner the other day what was wrong with me ( I personally thought your employer is not allowed to ask that?) so know doubt he will want to find out tomorrow. Don’t think I will mention the cinema or he will think I have been faking it.
So Monday morning came, last night I had an awful night I was still up at 3:30am, backache and a sore throat. Again couldn’t get up, had to get partner to call in sick for me. Apparently my boss was very nice but you could tell he wasn’t impressed. This is my third/fourth time off being sick since I started in February. So not surprising he’s not impressed. I’m getting more worried about my job, I don’t know what to do. If I lose my job we are in deep poo.
Bloods are tomorrow.
Someone on a ME support forum I am now on shared this link (below). It’s very good at explaining my crashes.
http://sweetbriarsisters.com/blog/wp-content/uploads/2013/01/Chronic-Fatigue-Crashes1.jpg
Slept until 13:00 when my painter called me. Embarrassed to say I have been in bed this long!
Today started at 10:45 when my phone went off. Someone was calling to see our dog for sale. Unfortunately my health is getting so bad I can’t look after her as well as I should be able to. I had to tidy the house which just tired me out, I skipped breakfast too. Only had super noodles for lunch as I had no energy for anything else. Call back from lady saying she’s not coming round now. I went to have a rest on the bed my back and head were killing me and I was just soo tired!!
Went to pick up my son at 17:00. Tried putting him in his car seat, my arms just killed me I am so weak! Went to a BBQ at my folks. Just absolutely shattered and I’ve hardly done anything today! finding it very hard chasing around my son. Feeling very dizzy tonight too.
I’m getting worse, earlier I measured out rice for dinner in a bowl. Like five minutes later I’m looking around the kitchen for it, I could feel more and more frustrated and asking my partner where the hell it is. I eventually found it in the cupboard and I had put the bowl back in the cupboard and stacked it onto of the other bowls with the rice in it still! Not only that I put the milk in the glasses cupboard again!!
Again today I couldn’t get out of bed, my partner is saying ‘you’ve got to get up’. I try to explain that I can’t. I feel awful.
Getting very worried and feeling I can’t go on like this, I am desperate to be normal. I later booked a doctors appointment. At the doctors I explained I have neuro symptoms, weak muscles etc and nothing has really improved since I started my b12 injections last year. She said it sounds very likely that it is ME/CFS. I have to have the normal routine blood tests next week, if they come back normal then it’s properly ME she said. Great 😔. I can’t imagine they will show much as I only had then done last year. She said there’s no tablets or anything to cure it, just time, managing it and how to cope.
Feeling quite scared, how do I tell my boss this? What will they say? I haven’t managed to talk to my partner yet, what will he say? I know he is worried I will lose my job. How will I cope? I have so many questions right now I don’t know what to do or where to turn!
Will it mean I may have to give up work? Will I get any help?!
invisibleb12illness 