My partners Bechets, my Depression & anxiety mix - Behçet's UK

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My partners Bechets, my Depression & anxiety mix

Leola
Leola

Hi all,

Thank you for all your posts so far they really help.

My partner has Bechet’s and generally fights it really well (in my opinion) but gets flare ups and just crashes sometimes for days with so much pain. I suffer with Depression and Anxiety and whilst generally ok, can have massive downwards spirals that are hard to get out of. The issue we have is that stress is the main trigger for both of us so set us both off making it harder for each of us worrying about the other. Plus neither having energy to support the other and lift back up.

I do what I can and my partner keeps asking how to help me, so am hoping you guys can give me advice on how I can help him.

This week he has had the biggest flare up I have seen and whilst at times seems ok, I don’t know how to help for best. He avoids hospitals due to previous issues getting stuck there with incorrect treatment given, refused pain killers, plus becoming a Guinea pig to doctors who’ve not experienced Bechet’s. Also he tells me why he eats such varied food in intense quantities depending on his cycle of medication but I wonder if there is some advice I could get to help with a nutrition plan. Finally due to his joint pain he wears cushioned insoles to assist but would love to start going for walks again, can anyone recommend footwear insoles etc that may reduce joint pressure/pain.

I know that’s a lot but I love the bones of him and want to help, plus it’s his daughters birthday this week so want to get him as well as possible for her.

Love and peace to you all

4 Replies
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Research LDN (Low Dose Naltrexone) it’s a huge help for my pain and energy. My daughter also takes it for depression and anxiety. It may suit both of you. There are Facebook groups that are a great support for people using LDN. The flare ups are all part of it and learning to cope with them is the hardest part. Learning to pace yourself. I’ve had Behcets since I was a child. I’ve been on LDN for about 5 months now and couldn’t imagine my life without it. Good luck xx

Hi leola

Im so sorry to hear your pain . Ive now had Behcets for about 5 years and my hubby has bi polar so i know how your feeling its very hard when your both having a hard time. All i can say is be there for one another hold each anther . You can both get though this together by staying strong there is a light.

For pain in the feet i always wear vionic shoes and this really has helped me. Good luck to you both take care of one another the best you can . Xx

What a lovely caring thing to do, to reach out like this.

It’s so hard when you are both under par, especially when there are children in the mix. My husband suffers very severe hayfever so there are several months of the year when he can’t do much.

The key for us during those times is not to sweat the small stuff. We need a lot of rest, so the house gets messy. He can’t garden, so I do what I can and let nature deal with the rest. Our home is a bit of a tip during those times but we aren’t hosting dinner parties so no problemmo. If you do need to entertain for his daughter’s birthday, ease the way by getting as much made and delivered as poss. Get a local baker to make the cake or buy one in a supermarket, surround it with gorgeous fresh fruits and a jug of cream, set out some nice crispy snacks, use paper plates and enjoy each other’s company.

We reduce the strain of feeling ill by doing things we get pleasure from. He watches sport on TV, I paint, and even if we don’t have the energy for long walks we try and get ourselves out, drive somewhere nice and have a gentle stroll. When you have limited energy it is really easy to slip into the trap of running your batteries down doing chores and then slumping, but that way lies depression. The sicker we are, the more we try and do enjoyable things. Eat out, go to the cinema, sit in a pub garden for an hour with friends or snuggle up with Netflix.

We do try and eat right. It’s easy to load up on high carb junk foods when you have no energy, as they do give you a boost sometimes, but its very fleeting and always followed by an evil slump. We buy lots of fruit and salads and easy stuff like tofu wieners and quorn fillets, and limit takeaways to once a week. I’ve tried every diet going but in the end, it all boils down to masses of fruit n veg, and not too much crap. I’m veggie and he’s vegan which limits our choice of crap quite nicely!

I had horrible ankle problems due to calcification in the joints a few years ago. While waiting for surgery I switched to wearing running shoes for everyday wear, and now I rarely wear anything else. I have found a brand style that fits me perfectly (Nike Pegasus) and now have 4 pairs in various colours, one of them waterproof. If I wear other shoes I pop a set of the Pegasus insoles in them.

Hope some of this helps. Good luck to you both. Hope the birthday goes swimmingly xxx

Hi that’s interesting about Nike trainers. Works for me too. I don’t wear them all the time but do wear them and find them useful.

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