I have to have a low histamine, low fodmap and low fibre diet. This is because EDS has caused Gastroparesis & Mast Cell Activation Disorder. I also picked up IBD along the way. #ehlersdanlossyndrome #EDS #HSD #chronicillness #zebra #ukzebrasunite #awarenessalphabet #mayawareness

I'm lucky to have had great OTs. They've helped my fingers, mobility and sleep. #ukzebrasunite #mayawarenessmonth #ehlersdanlossyndrome #EDS #HSD #chronicillness #awarenessalphabet #zebra #occupationaltherapist

During 2020 most physio stopped and so a lot of us EDSers have suffered because of it. Hopefully as things return to normal, we will become more active again! #ukzebrasunite #awarenessalphabet #ehlersdanlossyndrome #mayawarenessmonth #HSD #chronicillness #EDS #zebra #physio

Do you have a question? You can ask me anything about EDS. 😀 #ehlersdanlossyndrome #HSD #ukzebrasunite #mayawarenessmonth #chronicillness #awarenessalphabet #EDS #zebra

I am so lucky that my husband Adam came into my life (post diagnosis) and accepted me for me and not my EDS. He is my rock and I'd be lost without him. 🥰 #relationships #love #ehlersdanlossyndrome #chronicillness #HSD #EDS #mayawarenessmonth #awarenessalphabet #ukzebrasunite

When I was diagnosed in 2009, there were no EDS support groups, just a web forum on the EDS UK website. When you get diagnosed you aren't given any information on what support there is out there! #ehlersdanlossyndrome #HSD #chronicillness #awarenessalphabet #ukzebrasunite

Due to some very bad past experiences in A&E because Drs didn't understand EDS, I now have severe anxiety about going to get seen. It's happened at 3 hospitals and the worst left me severely traumatised with bad mental health consequences. This shouldn't be happening!! #eds #hsd

Anyone who knows me is aware I can cancel plans at the last minute. This isn't because I'm being difficult or inconsiderate, but because I can go from doing things to needing to lie down and rest in the space of a minute. #ehlersdanlossyndrome #EDS #HSD #chronicillness

Do you know someone with an invisible illness? Would you know they had a chronic health issue? I get looks from people who judge me for using a wheelchair! #awarenessalphabet #EhlersDanlosSyndrome #mayawarenessmonth #HSD #chronicillness #EDS #visibility #ukzebrasunite

I think I've had literally every body part x-rayed! Injuries are very easy with EDS and sometimes it's 'just ligaments and muscles'. But these can take longer to heal. I've never actually broken a bone before! #awarenessalphabet #ehlersdanlossyndrome #HSD #chronicillness #EDS

I look after myself by pacing so I don't overdo things. I also enjoy relaxing listening to music, watching a good Netflix series and doing Diamond Art. #selfcare #ehlersdanlossyndrome #HSD #chronicillness #mayawarenessmonth #awarenessalphabet #ukzebrasunite #EDS

If you know another zebra you'll maybe notice we have some different symptoms to each other and we most certainly don't seem to fit the go to diagnosis from Drs!! #awarenessalphabet #ehlersdanlossyndrome #EDS #chronicillness #HSD #mayawarenessmonth #ukzebrasunite #zebra

Many adults with EDS say they were great gymnasts/dancers/athletes when they were younger due to how bendy they were/are. I loved gymnastics when I was 5-7 years old as I was actually good at it! #ehlersdanlossyndrome #eds #chronicillness #hsd #mayawarenessmonth #gymnastics

Don't forget to check out my Tiktok channel: tiktok.com/@thepotsiezebra

I have opened a shop with EDS fun stickers and products. If you want a slogan or phrase in sticker format, let me know! redbubble.com/people/potsiez…

When you go to get your wheelchair parts changed and told it's quicker if you can come to the clinic. Only to be stuck waiting over an hour in an office chair with no drink, no way of getting help or getting to the loo and no idea what's happening. #worstcustomerservice #ajm

POOR HEALING..... My skin is so stretchy and like a Peach, so any injury I get seems to take forever to heal. #eds #ehlersdanlossyndrome #mayawarenessmonth #hypermobile #chronicillness #health #zebra #Spoons #faultycollagen #genetic