Thursday, 18 February 2016

We Are Struggling

I seem to be in a constant daze right now, and I'm getting frustrated that I'm unable to concentrate much. There is so much going on, and so many worries, that I'm struggling to cope with it all.

Both my parents and I have various long term illnesses and disabilities. Mum and I can't work, and it looks as if my dad may have to consider giving up work soon too. I feel so guilty that my dad has to do so much around the house. I do try so hard to do more, and I'm nearly always pushing myself too far (out of necessity!). It's getting to a point where we are worrying about the future. How will we manage around the house? Can we afford to keep up with bills? Will any of us be able to do some sort of work?

We have appointments coming up that may/may not provide answers; but in the meantime we are left trying to figure out what kind of support we can get (social care, benefits etc). If anyone thinks a life on benefits is an easy one, they seriously need to sit down and listen to people's experiences. It. Is. Not. Easy.

My parents, friends, and my boyfriend are all so supportive and understanding of my health problems. I don't know what I'd do without their support. They see/read about my good and bad days, so mostly understand how much I struggle and why I'm not able to work. I so wish that certain other relatives could understand that too though. I'm so tired of being asked if I'm back in work yet, why can't I do *insert completely unreasonable job here* etc. They seem to believe that I will recover at some point, and the idea of me never getting better seems impossible to them. I'm sick of having to explain over and over. It's taken me a while to get to a point of acceptance, and I still have times where I get so angry, frustrated, and upset that nothing is improving. I'm just trying to manage the symptoms I'm able to as best I can, and do what I can to enjoy life. That is my way of coping. Of course I read up on any new research I come across, but I need to be realistic and accept that right now all I can do is try to manage my conditions.

Support from loved ones is so important. Educate yourself, listen, do not judge, know that you may not fully understand but you need to accept what we are telling you. It is hard enough to deal with the daily struggles of having a chronic illness.

You may have noticed that I now have a donate button on my blog. If mum doesn't get any more help from her current specialist, we may have to travel to a hospital with more facilities, funding for new treatments etc. This will of course mean more expenses, and I'm not sure how we could come up with the money. I'm terrible at asking for money but I may need to soon. In return, I intend to blog more often and if there's anything in particular you'd like me to write about, give advice on etc, then leave a comment.


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