Hi my name is MICHAELLA and I'm new to the group

[michaellaoshea]

I'm sick and tired of feeling like this. 3 years ago I received a 'probable bechets diagnosis'. At the moment I'm on cholchine, stomach protection medication and pain medication. There are so many different drugs I'm on there is too many to list. I practically have all the symptoms relating to bechetts. And this is the worse I've felt since having my diagnosis. I'm sick and tired of them putting up my pain medication I want them to start properly treating this horrible disease. I don't know what else to do. My GP is fantastic but my local hospital is dreadful. They unfortunately do not know enough about the disease. And accuse me of lying. Since January 18th I've hardly left mY bedroom. I'm in so much pain and I'm not going to up my painkillers all the time. I'm so depressed and feel so alone. I now have to have someone with me when my husband goes to work. This is because my joints are so bad. I would rather go through child birth. And I've had 3 children. I've stayed quiet for so long. I've been patient, I've done everything they have asked. I can't carry on anymore. I'm crying and I don't know why. I've had this forever and still I can't figure out what to do next. I'm thinking of asking my GP to refer me to another bechets centre. The one I'm at is so busy. My next appointment is 6 months away and my last appointment was in August last year. My GP can never get hold of the clinic and when he does he gets no where. Out of the three centres in England which one is the best. Thank you for reading my little note.

[billi]

Hi I am so sorry for your pain and suffering. I have been suffering with BD for 32 years and it isn't an easy ride, but I must tell you it has moved forward so much. Thanks to the Behcets Society we have this site, the Centres of Excellence, much more research, more knowledgable doctors and many more and better medications. We all suffer with various symptoms and have terrible days, bad days and some good days. The trick is to accept you have this disease, enjoy the good days, stay strong and positive. I'm sure you can do this as I did and I had to bring up three children alone since my last child was 2 years. There is no quick fix it will probably be with you for life but you can't let it beat you down. If you are having a bad flare then you must rest and not worry. Let the children help you....making their own beds, sharing the dish washing, getting each other ready for school etc. Let hubby do the heavy jobs...vacuuming, washing etc. Don't be afraid to ask for help, we all need help sometimes. As the flare subsides don't rush into doing everything immediately, little by little as you get your strength back. Try to do some easy exercises every day and get some fresh air. I know you very much that you want your life back without this illness but until a cure is found you just have to make the best of it. Don't think back, think forwards. A good idea also is to start a daily diary of how you are feeling each day and any symptoms and medications you take. Also take photos of any ulcers or rashes anything you notice that is different and take these and the diary to any health appointments and if possible a family member or good friend to be in your corner. I do hope this helps and I wish you the best.

Hugs

Billi

[michaellaoshea in reply to billi]

Thank you so much for replying. Reading you're reply has made me smile. Thank you once again. Michaella

[michaellaoshea in reply to billi]

Hugs back

[sam0511 in reply to billi]

Good advice Billi as always...think you could take this up professionally!!

[billi in reply to sam0511]

Thanks. I just enjoy helping people if I can.

[sam0511]

Hi, I am sorry that you have experienced this with your hospital. Depending on where in the UK you are, I have heard Birmingham is excellent. But my hospital - Derby Royal have been incredible. Get referred and quickly. You have put up with enough. I was out on predisolone - steroid - and I am on Azathioprine. Its working. Let us all know how you get on. Good luck.

[michaellaoshea in reply to sam0511]

Thank you for your reply. Just reading your's and billi's messages has really lifted my spirits. I will of course keep you updated. Once again thank you🙂x

[Jaxxi]

Hi Michaella! Sorry you are feeling so terrible.

It would be good to go to a Centre of Excellence to firm up your diagnosis one way or another so you can get the best possible medications. You say you are at a Behçet's Centre already, though. Is it one of the Centres of Excellence? They are all very busy and a year between appointments isn't unusual, once you are diagnosed and on medication. They like to hand your care back to the GP. However, they will often move an annual appointment foward for you if you are feeling very bad, and you need your medications reassessed. You don't need to go through your GP once you are assigned to a CoE, you can approach them direct to ask for an earlier appointment.

I will echo Billi's advice to keep a diary and pictures. They help me a lot in talking to consultants.

I've been bad since February, and have spent a lot of time resting over the past few weeks. It's so depressing being cooped up in the bedroom, isn't it? I do my best not to stay there all day, even if it's just a matter of dragging myself down to the couch, or to sit for a few minutes in the garden, I feel a lot more human.

I can relate so much to your poor aching joints. My joints always kill me after a flare when I've spent a lot of time lying down. They get out of condition really quickly, and they are extra agonising when they are weak as well as inflamed. Today I am going to make the effort to do a gentle 15 minute yoga session. Even if it's just lying on the mat doing a few simple lying down twists, it will get my circulation going and I know will start to ease things up. If I do 15 minutes a day for a week, it makes an incredible difference. The good thing about doing yoga on your own is there is no-one to watch you or compete with, so you can genuinely do just as much as you feel is right. I use online videos, but sometimes spend quite a lot of the session sitting cross legged just watching the instructor do it for me, while I take some nice, deep, cleansing breaths

The other thing that makes me feel better when I'm cooped up is making a plan. At present I am planning a day out to the sea. As well as deciding where to go, I am listing what picnic foods we'll take - there are lots of things we can just buy, but there are a couple of things I would like to cook ahead and freeze (if I can). And I am even planning what to wear. Definitely a nice new top! Browse browse browse I like doing landscape photography, so this has got me looking at my photos from last year... one or two are even worth printing out, I might manage that.... With the way my mind works (bonkers butterfly would be a fair description) you can see how The Plan leads to all sorts of other distractions that not only take my mind off the pain and me feel more positive, but also give me something to talk about that isn't sickness related if people say 'and what have you been up to?'.

I don't know when I am going to be well enough to go on this day out, but it will happen sooner or later. It seems a little crazy, putting so much thought into such a simple thing, but the key is that I always have something positive and achievable to turn my mind to when everything around me starts looking grey.

It is a long haul when you are in an extended bad spell, and sometimes it feels like you are climbing Everest all on your own. But you aren't on your own - most of us on here have been there, and know only too well how tough it is. Try and keep your spirits up if you can - live for today and cling to pleasures in little things. For me, today, it's birds making mayhem in my garden, and giving myself a manicure.

Let us know how it goes..

xx J xx

[michaellaoshea in reply to Jaxxi]

Thank you Jaxxi reading your message has lifted me. Im going to look into yoga. Hope your doing ok x

[distanttree]

Keep a food diary.

[nanax20708]

I also have Bechets and know exactly how you feel 😔 I've gotten to the point I can't hold down a job on account of the pain and don't know what to do next !! Any suggestions ?

[michaellaoshea in reply to nanax20708]

Keep going to your doctors. It's such a debilitating disease. I know what your going through. Ask to be referred to a pain clinic to see if they can give you something to get on top of the pain. Let me know how you get on.