this is the first time I've ever done this before so bear with me if it's a bit long winded and not fluid. Is this how someone with bachets feels? Somedays I feel like my body is stone in treacle and I'm trying to move but can't. I get angry with myself upset and annoyed it makes no difference I still feel the same. Has this happened to others. somedays I just don't want too go on. I've spent so much time in hospital it might as well be home. When I do Get home all I want to do is sleep. If it weren't for my husband I would not eat or drink he is my full time carer. Even simple things like washing dressing are really hard without help. My main problem at present it's I don't heal well. So when I get an ulcer it can take years for it to heal. Even then it can breakdown and start all overagain. The consent steroids, antibiotics, blood thinning injections, and countless other drugs not to mention the interferon jab is getting too much day in day out. As you may have figured there's other health issues on too. Is this the norm and am I just feeling sorry for my self?? Can anyone suggest any ideas that might help.
Tired so very very tired.: this is the first... - Behçet's UK
Tired so very very tired.
Welcome, you've come to the right place. You are not alone in the way you feel and I am sure there are lots of things we can suggest.
Rather than launch into ideas and suggestions myself, I would be interested to know a bit more about your situation as not all suggestions may be appropriate for you. Firstly, are you in the UK? If so, do you see a BD Specialist? Have you been to a Centre of Excellence? What sort of help and support do you get regarding management of your condition?
By the way, in reference to your other post, BD is quicker than typing Behcet's and that's what we tend to say on here, but no one is going to judge you for your spelling.
Darn, posted before I finished (again).
Ideas that might help could range from the medics you see, fnancial aid advice, equipment, care, relationships, management - all sorts of things, so that is why it would be useful to know a bit more about what kind of ideas you are looking for and what kind of help you get now. Then you won't get long irrelevant posts from people like me who tend to waffle, as you can probably tell 
I should point out that none of us can give you medical advice, we can only respond from our own experience, but that usually turns out to be very helpful.
Hello Paula,
This blooming disease can be really debilitating especially if your symptoms never seem to improve.
I have found that when I am feeling low some simple pyschological tricks can sometimes help me. Even if I am really poorly, I set myself an attainable target which I could attain in a short time (say a few days). This could be a visit to the hairdresser, which us girls usually find a good thing, or arrange to meet a friend or relative for tea in a nice, but affordable restaurant. These 'dates' would force me to take care in how I look and how I dress. This should help your self esteem and give you something to look forward to.
The fact that most of us have no outward sign of having this nasty condition doesn't usually help. My lovely mother could never get it into her head that I was not well!!!
I hope you are receiving proper treatment. Your GP should be able to suggest some help, as a lot of us suffer from depression sometimes.
If only I could wave a wand and say that all will be well for you! Please keep in touch.
All the best, Suzanne x
Hello Paula,
Suzanne has offered you some wonderful advice which I find works so well. You can be feeling so miserable at home but getting out with friends for coffee does wonders. I saw an ot (occupational therapist) and she had a booklet that offered many ways to conserve energy, just little things but do make you feel better as it feels great to achieve something.
Give it a go.
Best wishes,
Felicity
Hi thank you for your suggestions to help with my low mood. I hope to try some of these tips out once i'm out of hospital.. I hope that I'll be out soon. Then it's getting back into the swing of things. It all takes time. It's so frustrating at times. hopefully I'll be home soon. Everything went to pot this last year. Maybe this year will be better. again many thanks for your replys,.I will endeavour try your out. Paula
good news bad news & positive outlooks
Can we talk about brain fog again?
New and in the diagnosis process
Genital Ulcer
Body's recovery after discontinuing steroids
