I have 2 daughters and my youngest one is 10, she's a very gentle soul and very intuitive about me; She's worrying about me and things are beginning to manifest in her getting heachaches and yesterday she had an achy neck.
These basically mirror my latest physical problems, yesterday upon picking my daughter up from school she was crying and really upset because she thought I might have been involved in a car accident on the way to get her. I reassured her not to worry but when we came home we had a good chat and she said she worries about me alot.
Last year I was really ill for about 5 weeks with pneumonia and ended up in hospital for 5 days, as you can imagine my children especially my youngest were really upset. My daughter thinks the same is going to happen.
Being stoic really isn't me but I've tried not to winge and I generally use humour to diffuse my bad health but vomiting, being in bed because I am having a flare , migraines and injecting medication is all hard to hide (well I do hide the injecting, but she knows I have injections).
Anyone got any advice as to how I can help her. I'm very open and said I AM going to get better and I say the medicine will make me better but all she can see is that it makes me worse !
I've got several hospital appointments coming up (I need laser treatment on my eyes for an iridectomy) and I can't hide the fact I'm going hospital as I won't be there to pick her up from school plus my eyes look like I'm jacked up on amphetamines (boy big pupils are freaky).
My other daughter seems ok with things, she's older but I know she must feel crappy too. I've asked her and she says she's ok.
It's been such a bad year, my step dad died, my dad is really very ill, my mother in law has terminal cancer and I've got this, my children are literally surrounded by ill people (they don't know the extent of both their grand parents problems).
I currently am in between treatments for my arthritis, 2 DMARDs I've tried I cant tolerate and I've said Im not keen to try Leflunomide due to specific side effects and my medical history.
Rhematology nurses are saying they are waiting to hear back from consultant as to what my plan of action is but I have a face to face appointment in 3 weeks and feel I will be left adrift until then. In the mean time I've developed a big bump on my already swollen left ankle and I am in constant pain, i flare quite often in between so bad I literally can't get off the toilet and my husband helps me.
I've been offered the depo injection but the last one really didn't help too much so I don't see the point and I can't have oral steroid as it increases the pressure in my eyes 🙄
All around its a mess. I'm trying really hard not to look like I'm in pain, I get back from school after dropping them off and some days I cant get out the chair for ages.
Maybe I should try the depo again , I really don't know. I feel quite optimistic that I will find the right drug, I'm encouraged that methotrexate did start to work on my joints before my body couldn't tolerate it so things do work. It's really testing my resolved but now I see it's not all about me and my family are really suffering too and that upsets me the most.
My husband has been an absolute rock, he does says he feels helpless at times and he's really tired as he's working full time and does most of the meals in-between me being unwell.
I feel quite venerable saying all this out here so please be gentle ! Just nice to have somewhere to come for a dump (no not that kind ha ha ).
Just wondered how your families have been whilst you through this. Its quite a lonely disease isn't it at times.
Thanks liz x