Please could anyone else tell me if they are r... - Behçet's UK

Behçet's UK
4,427 members3,783 posts

Please could anyone else tell me if they are really struggling with Behcets?

My husband is amazing but because this illness has got a lot worse for me I feel useless and a burden.

19 Replies
oldestnewest

I dont suffer any where near as much as some of the lovely people on here..

My pills keep my BD under control to a certain point, and the less stress im under the better.

I also find routine helps. I can be a moody bitch at times and my body is in constant pain..

YOU ARE NOT A BURDEN!!!!!! and if your hubby hasnt told you Id bet my life he thinks it every day.. I could not cope with my part time job and six year old son if it were not for my OH (other half).. he hoovers does dishes makes beds cleans and all without a single word of ..please can you do this for me...

Your hubby is probably the one who will feel like a burden, as I do..

If you possibly can go to the doctors appointments with him..and help with his meds..and above all talk and share..

I forget sometimes just how much my OH does for me and I want to say thankyou to you, because if I hadnt seen this today it may have been a few days or weeks before I flung my arms around him and told him I love him and I appreciate just how much he does for me..we are a great team

Dawn xxx

Reply

Hi Dawn,

Thanks for replying but it is actually me that has Behcets and that is why I am finding it hard as I find it quite difficult to rely on people when things get bad. My husband constantly tells me that I am not a burden and that he loves me, but it is just how I feel. Like your husband he couldn't be more supportive and I am grateful for that especially when I can be moody at times too!!

He always tells me if it were the other way round, I would look after him and I would without a doubt.

Thanks again for replying and take care

Jo xx

Reply

Wellington

I too feel like a burden as I always seem to have some pain or aches or headache but I tend not to say anything to my OH because I expect he thinks 'here we go again'. But deep down I know he cares and if anything he is the one that keeps me going because he wont let this disease beat me! He doesnt allow me to feel too sorry for myself and his positive attitude helps. I do wonder if we swapped bodies for a day if he would be curled up in bed feeling sorry for himself!!!!!!!! I am sure your husband loves you so much that he just wants to help! In sickness and in health in wedding vows are quite true to us BD sufferers!

Keep you chin up.

Angela

Reply

Hi bailey23,

Thanks so much for the reply, I do feel a lot better after reading these lovely replies. I think because there isn't many people who know what this disease is, it can make you feel very lonely. This website has been a lifesaver for me. As I mentioned before my husband is lovely and does get fed up when I say that I feel a burden. He always says if it was the other way around that I would look after him and I would no question. My consultant does say that my Behcets is very bad at the moment as it seems to be attacking everything so hope it will improve soon.

Thanks again for the kind words x

Reply

Hi

The problem is we look well most of the time! I have a steroid moon face and am always red in the face! If I was pale and skinny people may ask whats wrong!

At least on here we all know how each other feels. Keep your chin up. I have just been through a flare up with really bad headaches and fatigue and aches but you have to keep going and smile even if you dont feel like it!!

Big hugs

Angela

Reply

Hi Angela,

Thanks for all your kind words it makes a huge difference hearing them. I too have a moon face and I am sure if you put me in the sky I would light up the whole of Wales!!

I just feel a bit desperate at the moment because I used to have really bad flare ups but might have a break in between, but since January it has been constant and the medication I have tried so far hasn't hardly helped.

Even though I do smile on the outside and make out everything is fine, on the inside it's a completely different story.

Thank you for the hugs too and am sending some back to you too,

Jo

Reply

Hi, I hear you ! Wow do I feel as you do. I hate that I used to be so capable and independent ....when I can not do anything for days I wonder if my family will forget that I am so not lazy. I would rather be the one caring for the family like I used to. I urge you to stop all dairy for at least a month as new research shows a link between cows milk protein allergy type 3 which effects the immune raising white blood cells and causing BD. Going off all dairy has been life changing for me and my family but it takes a good month to feel better. Please try this and let me know how you go. Also why not talk to your husband and tell him that having this disease is worse for you as you feel like you want to do more to help him. Its bad enough dealing with BD and lonely because as much help as you get, its still impossible for others to fully understand. Just thank him and tell him it makes you feel so blessed to have a great man. He only needs to feel appreciated and loved as every other human and I bet he feels so blessed to have a great wife. Joanne

Reply

Hi Wellington. I've definitely had times when I've felt useless, but I've found that I don't feel that way forever. Although things get worse, in my experience, they do get better. There have been times when medication for depression has helped too. Like you, I have a wonderfully supportive partner who tells me I'm not a burden. When I feel really bad, I just have to trust that that is true.

Reply

Hi Godles,

Thanks for replying it is very much appreciated. I am glad you have a supportive partner too, and also it is nice knowing I am not being pathetic and that other sufferers can also feel this way. This is why I am so grateful I came across this website and chat to people who have this condition. Take care.

Reply

Behcets itself is the burden!! I often feel that I let my OH down by being a whimp.

Like many others being in constant pain and suffering severe headaches really does drag me down. Following a flare I have been started on Azathiprine which is taking every inch of energy out of me making every day a struggle.

The people we care for and love can never fully understand how we feel, but deep down they would do anything for us. My 10 year old daughter is my rock and inspiration to fight.

I'm sure your hubby would do anything to have you fit and well. x x

Reply

Hi,

Thanks for replying I really appreciate it. I too am on a high dose of Azathioprine but haven't had any improvement in symptoms. The only thing it has done is give me a lot of chest infections due lowering my immune system. I have also been on high doses of steroids which I really hate. Every day is a struggle for me too so I do sympathise with you. I do try and tell myself that I am lucky to have a loving husband, lovely children and great doctors but every now and then when I feel really ill and in a lot of pain it's hard.

Take care xx

Reply

Hi,

Sounds like you have a great support circle which is very important when you are feeling so ill.

Having great doctors is a plus too. I have a great G.P and consultants at the hospital which really helps. Like you say it is hard when you feel so ill and are in a lot of pain.

Hang on in there. x x

Reply

Hi,

Thanks again for replying it means a lot. I was just wandering what symptoms you have and if you find that Azathioprine helps you. My consultant wants me maybe to come off this as I keep getting infections and maybe go on Methotrexate. I have also been on a high dose of steroids for nearly 6 months also, trying to control the Behcets and infections but came off that a few weeks ago. He wants me to go back on the steroids but I really don't want to as I couldn't sleep and was SO hungry all the time. The last thing I need and want to do is eat when I have sores and ulcers in my mouth and all down my throat!

Take care xx

Reply

Hi, I have been suffering really bad bouts of mouth ulcers, ulcers down below, migraine type headaches, sore joints and more recently right sided abdominal pain. Only been on Aza for about 3 weeks so really early days. I was on Aza a while ago when I was wrongly diagnosed with Crohn's and felt really good once it got into my system. Fingers crossed I will get back to that place. My consultant has given me high dose intra muscular steroids which he says cause less side effects. Hopefully you will get sorted soon x x

Reply

Hello

I am very well aware that the pain of Behcet's disease in the body, but it is a burden of all diseases in humans need to know to get rid of them by fighting it in good health, I hope will increase my resume actually get a bit of hope.

1 like
Reply

Hi Sunset,

Thanks for your reply. I am so pleased I have joined this group as it has made a huge difference to me. Having other people to talk to who understand is lovely and I don't feel as alone anymore. Thanks again.

Reply

I am really struggling this week. The pain, lethargy and ulcers are so bad I am very worried aout the future. I completely understand how you feel.

Reply

Hi,

I am sorry to hear you are struggling and really sympathise. It is a horrible illness and I think it is made worse because when people ask what is wrong with you, they haven't heard of it and really don't understand how ill you feel or how bad it can get. I am so glad that I came across this website to talk to other sufferers and to know I am not alone. I really hope your health starts improving very soon. Take care.

Reply

People not knowing what BD is, is alone frustrating in itself. People seem to think a few mouth ulsers is nothing and really don't understand how bad it can get.

I'm thankful for this site too as it is great to be able to chat to people who do actually understand. x x

Reply

You may also like...