Sometimes just sometimes I resent this condition

[Papapickle]

Hi,

I was diagnosed nearly three years ago now. I have been in and out of hospitals as you all have too and I have been confined to a wheelchair but managed to get out again.

Most days I just get on with it, but I hate moaning to my wife who is the most wonderful woman. So here I am to vent to you.

Today I don't accept it. Today I don't feel as though I want to be brave or be strong, today I want just one day of feeling normal. Without pain, without anxiety and just able to be me.

Today I want to spend the day with my girls, fly kites, build sand castles, make cakes, run as fast as we can and sit and have a picnic together. Just us.

Instead I have mouth ulcers that burn, hips that make me shuffle when I walk, my right arm and neck are so painful I just don't want to move and it's relentless.

I know that it will pass, but passing quickly would be great, let me get back to being me and let me be their dad as he used to be and not restricted as I am now.

Let my wife get some extra sleep or time to herself without worrying about me.

Maybe one day.

Thanks for listening 👂, one day I will return the favour.

Me.

😉

[UKADMIN Partner Behcet's Syndrome Society]

Thinking of you and hoping that 'one day' arrives soon and lasts for a very long time. Warm wishes.

[Papapickle in reply to UKADMIN]

Thank you for your warm wishes. Fingers crossed. Nice to know there is someone else out there.

[sian35 in reply to UKADMIN]

Hi - I get days like that too, sometimes being brave seems too much. Good to be able share your thoughts here.

Kindest regards,

Sian

[ColdNoodleSoup]

You're welcome to open up here. I also totally get not wanting to be brave and missing the life I had. And I have never been hospitalized so I can't imagine your pain.

But from the sounds of it you're surrounded by love and loving them back is all your family needs from you.

[UKADMIN Partner Behcet's Syndrome Society]

Hi Papapickle Could we please use your post 'Anon' in our next newsletter? We think your words are quite powerful and many people with Behcet's will relate to them. You can reply on here or by email [e-mail]

[Papapickle in reply to UKADMIN]

Thank you for your reply and yes of course you can. No need to anon me, I am proud of who I am and if it helps anyone else it's all good.

[UKADMIN Partner Behcet's Syndrome Society]

Thanks Papapickle.

[distanttree]

I will join your sometimes I resent this condition club.

[Papapickle]

It did get better. Well I say that but I received an additional diagnosis of degenerative spinal disease. Another kick in the bits but actually this time made me realise all the labels in the world can't change me. They can knock me and times get truly tough.....