overwhelmed and exhausted

[Welsh92]

I don’t really know the reason to this post but I needed to post somewhere.

I feel like I’m losing the plot, my memory is so bad and I’m so exhausted I’m only 33. I had a melt down in Sainsbury’s this morning standing there staring at the screen wondering why the till wouldn’t give me £10 back and the staff came over and said I needed to put an extra £5 in. Leaving there thinking it had messed up, to then realising the £10 in my purse wasn’t missing i had spent it this morning to buy a coffee at a hospital where i dropped my daughters heart monitor off.

I’ve only recently been diagnosed after a long time of investigations, but I don’t think I’m coming to terms with actually having a diagnosis. I don’t know if this is because I’m still not managing the condition, I’ve waited 5 weeks so far to have an appointment to get on to adalimumab and have to wait until another week for that appointment.

I’m so sick and exhausted from hospital appointments, not just for myself but my two children. My one child has cystic fibrosis anf is under investigation for other things and my other child is also being investigated for Behçet’s. Over the passed few weeks I’ve been to appointments at least twice a week with one of us. I’m so tired and can’t function properly, I can’t focus and I’m flaring. I can’t rest at the moment even though I want to and my body is telling me I need to.

on top of this I’m having to chase other departments as I’m due for a laparoscopy, however they still haven’t deemed me fit and it’s been 3 months! It only takes one email to my team to check it’s okay to go ahead and that the 12.5mg of steroids is okay to have surgery.. if they don’t do it within 3 months I get taken off the list and have to be refereed again meaning another 2 long years wait.

Sorry to be a downer - just needed to vent as I’m going to go crazy otherwise

[CecilyParsley]

Hi, I am so very sorry that you are suffering so badly. You have a huge amount to contend with having two sick children on top of your own health. No wonder that you are struggling. Have you got any support?

Have you called the Rheumatology Helpline for support? I know this will not help you physically but I have recently received sone much needed and effective support from The Wren Project. A volunteer calls me once a fortnight and listens. I can rant, cry, open up and know that they are there to see me through it. It has helped me immensely just to get things off my chest and express my fears and frustrations which seem to be increasing daily.

I sincerely hope that the adalimumab works well for you and alleviates your flares xx

[Icefire]

I'm sorry to hear how tough things are for you right now. I can totally connect with the memory issues and foggy brain. It's not uncommon for me to look like an idiot. I have Dyslexia on top of Bechets.

I've found diet a helpful strategy and reducing refined carbs and increasing veg have given me more clarity, focus, energy and less symptoms. I also notice a correlation between party season and mouth ulcers in my kids.

A decent multi vitamin (I like cytoplan, because they appear to be quite ethical and present their nutrients in a usable form) and Omega 3 supplement may help to increase energy. I (google) doesn't know of any interactions between these supplements and the drug you are due to take but you should probably check with Dr.

If your UK based have a look at 'Eat Smart

Secrets of the Glucose goddess on Channel 4' if still available or her book / website.

Stress is probably a huge factor hear. You could try writing down your thoughts to get them off your chest and move as much as your body will allow.

I hope things improve for you soon.

[Budapest]

It might be worth asking at your GP, Citizens Advice Bureau , Volunteer bureau, hospital or Church about whether there is any practical help available locally.

I am not up to date but e. g. Social Services used to be able to input free practical help for a couple of sessions a week in certain circumstances. If available, this would help you to have a regular rest period. They used to do what was called an Assessment of need.

Hope this helps a little,

Budapest

[Amy-Tenacious1]

I so feel you. I have a Bechets diagnosis, but the GP in charge of my current care says he doesn’t believe it… So here I am, after many years of waiting to have my condition addressed back to square one and having to convince him something needs to be done rather sooner than later.

The fatigue is overwhelming and my once sharp mind is reduced to mush. I know this is of no immediate help, but just being able to understand that it’s not in my mind, your mind, and it is actually happening and something could be done to address it, brings some lucidity to the everyday.

The wait is unbearable. It’s a subjective feeling and not something linked to a calendar. It feels more like a fight than a condition. But hang in there and remember you are not alone: you have us. So feel free to vent ❤️

[rooser1]

agreed with the lifestyle change. we have to give ourselves as much as a chance with everything thats going on. I am sugarfree, no processed food (as much as possible) and supplement with a b complex and a d and ive honestly never felt better. it takes time though to heal chronic inflammation, but im glad i started all those years ago.

hang in there, its one day at a time. <3

[Dolly-D]

oh bless you…. You have so much going on, all the stress will flare up your Bechets!…😔I hope you and your little ones get all the help asap..🙏🏻