Hi I am new to this site, I have been told I have ? BD .Any coping strategies that can be shared with me would be appreciated.

[joca]

I am 52 years old, with the memory of a 100 year old, lots of joint pain, mostly, elbows, wrist and knee. I have Sjogrens disease and frequent bouts of uvitis. .......and as for tiredness, I can sleep all day and night! My balance can be poor as is my concentration , often I feel I can not process a conversation and often mix my words up, or I say one word but it is not the word i thought I said! I rarely complain.................not because I want to be a martyr, I dont want to be thought as a hypochondriac, especially as I do not look unwell. I am still working full time, although I am finding it harder and harder to get through the working day. some days are ok, some days are a nightmare. Any ideas on how to cope would be appreciated, look forward to hearing from you.

[joca]

oops forgot to add that I have the usual ulcers!

[andreafm]

Hi joca

I must say you describe your condition well and this is familiar with a lot of us here, including myself as I have sjogrens, fibromyalgia and also neurobehcets. By no means would anyone here think you are a hypochondriac as we know what it feels like.

I am not suprised that you are struggling to get through a day of working full time with all this going on.

You don't say if you have a good consultant who is experienced with behcets and sjogrens or if your medication is stable. It can take a long time to get the medications right and so that is a very important part of taking back some control over your life.

The other thing that comes to mind is if your employer is aware of your condition and the difficulties that it imposes. Employers now have to assist people with disabilities within their workplace, this can be allowing you to alter your hours or adapting a part of you job which is particularly difficult with your condition. If it is a large organisation they may even have a union rep or even their own occupational health department that can assist with this.

Pacing yourself is important in trying to keep things on a even keel. I avoid a lot of stress now as I know what affect it has on my symptoms, particularly memory, fatigue and pain. I have learnt different ways to deal with stress and now decide which problems to take on and which problems I can live with, without tackling them.

I have a timetable for each week, which I do on a sunday and outlines things I want to do in the following week, including appointments etc. I then distribute them throughout the week so that I don't have to carry them around in my head or take on too many things which overloads me so I crash.

Hopefully some of this will help and you will be able to discuss with us so that perhaps we can help you more. I am sure other people will also come up with some good ideas, some which will be easier than others to do.

One of the mains things is that just talking to other people who are going through the same thing will go some way towards helping you to cope and you have made the right step towards that.

Andrea

[andreafm]

Hi joca

You have been through it rather haven't you and it is a lot to deal with, especialy having had 2 episodes of meningitis and respiratory arrest. I am not a doctor but I guess it could be that some of this could still be contributing to your extreme fatigue and memory etc.

It can take a very long time to get a definative diagnosis of behcets. Has you doctor said anything with regard to the possibility of having behcets ?

Having these other conditions does not preclude you from having behcets as well. In fact sjogrens can be a secondary condition alongside behcets. It is worth asking your consultant again about this particularly as you have the ulcers and uvitis frequently.

On the Behcets society website there are some very interesting factsheets that have been written by Doctors who have experience with Behcets.

The link to this is

behcets.org.uk/menus/main.a....

I have copied and used these before in the past to show doctors what I am trying to say or am concerned about. One of the factsheets give the criteria for suspicion of behcets and another talks of eye problems and another neurological problems - which describes a form of meningitis.

Not to say that this is what you have had, but it sounds as if you need a good discussion with your consultant and this can help you to prepare yourself before your next appointment....if you think it will help.

You will find that most of us have had to be very active in seeking out and getting the right help and advice from Doctors...which I know isn't always as easy as it sounds.

But If you feel you really aren't getting anywhere with your consultant it may well be worth contacting the Behcets Society helpline and asking for a list of consultants in your area.

The email address is

[e-mail]

take care

Andrea

[Sunset]

Hello Joca;

Behcet's Disease oral aphthous ulcers, genital ulcers, psödofollikülit, acneiform nodules, papulopustular lesions are considered as features based on diagnostic criteria. Yours is seen in BD rheumatic complaints.

To discuss;

[lesleyg]

Hi Joca

You almost descibed me! Someone said to me that this website is like a dam being broken. I think we have all been bottling a lot of things up and 'soldiering on'. Probably just talking about things will help - you can make these posts private - just to be seen by the group and not 'the world wide web'.

I still need to earn a living (I'm 55 without a good superannuation plan). Fortunately I was working for myself when diagnosed but that has it's issues as well. Could you do work from home (I think it's called telecommuting)?

Lesley

[lesleyg]

PS Andrea's idea of a timetable is a good thing - pacing yourself - I know I have to,

Lesley

[devonshiredumpling]

Hello Joca, I have nothing to add to what Andrea and Lesley have said, I just wanted to say hello and give you the encouragement to soldier on.

Di