Nic Needs A Break

Hi, this is Nic. Nic is my life partner & best friend, and she needs a break.

Nic has Ehlers-Danlos Syndrome, a genetic connective tissue disorder with a wide range of symptoms including hypermobility, joint laxity that leads to subluxation and dislocation, fatigue, brain fog and chronic pain. She's also had symptoms of PoTS and MCAS, conditions often linked to EDS/Hypermobility. Sometimes it's bewildering and overwhelming, the variety of symptoms that she experiences. Here are a few: Her right hip and shoulder sublux (partially dislocate) easily, the left hip and shoulder are also unstable. Three fingers are prone to dislocation (in the picture you can see she's wearing elastic finger pokes she made herself to provide compression and keep the joints stable). She's had constant chest pain for nearly three years, and recently developed a cough with allergy-like symptoms (breathlessness and restricted airway) that comes and goes, and can manifest in attacks that last up to an hour. Another recent development is that one of her cervical vertabra has started to sublux and shift as well, which is scary.

Some of these symptoms started five years ago, others have come on more recently. As the condition has developed, Nic has had to give up some of her favourite activities. She hasn’t ridden a bicycle in three years. She’s been an avid maker of detailed, complex cards to send for birthdays and holidays, but has largely given that up because of the pain and the difficulty maintaining concentration. She stopped wearing a rucksack for awhile, but recently started carrying a bag you can see the straps of in the picture - she holds the straps together with that green elastic band, which eases the pressure on her shoulders, and she can’t really carry anything heavier than about .5kg in the bag without pain & difficulty. Nic’s been a yoga teacher for 30 years, and a yoga practitioner for longer than that. Many of her favourite postures she’s had to give up because her body can no longer tolerate them. Also, her condition has had a huge impact on the way she teaches, as well as how much time she can give to teaching. The instability in her hips led first to the use of one, and now two sticks, to aid mobility. As she’s having to adjust to life with a disability, she’s having to confront new feelings of vulnerability about being in the world.

Ehlers-Danlos Syndrome is still considered rare, and isn’t very well understood, so there’s no clear care pathway, and it’s been an ongoing challenge to get medical help. She’s currently waiting for consultations from various specialists, and a genetic test that might determine which type of EDS she’s got. Through her own research and her involvement with both the EDS charity and Hypermobility charity in the UK, she’s becoming a ‘patient expert’ about her own condition, which has helped, but there’s still a long way to go. And it’s exhausting.

Because this has had such a huge impact on Nic’s life, and our life, she’s started to look into getting financial support through PIP (turned down), or help to buy mobility aids & other equipment (also turned down). She recently applied, and was rejected for an access card which would allow us to get things like theatre tickets at a reduced rate, with me as her carer. So far, these efforts have been difficult and challenging, and continually being told no by support institutions has only added to her frustration.

We haven’t been away for anything longer than a day trip for several years, and to tell you the truth, I think Nic could do with a break, just a few days away from thinking about all of this, and how to adapt her life/our life to it. One of our favourite places is Penzance, and they have a lido there with a geo-thermal pool. We’ve visited a couple of times, and it’s a huge relief for Nic to be able to float for an hour in hot, salty water. What I’d like to do is take her down to Penzance on the train and stay in a B&B for a few nights. She can have a hot soak every day, twice if she wants, she can eat quiche from the deli we love, browse charity shops, or sit and stare at the beach.

I reckon £800 will cover the cost of four nights in a B&B, four sessions in the geothermal pool, meals, and maybe a movie ticket. I’ve set aside £400 to cover half (my half, if you like), so what would be fantastic is for you to match me with £400 for the rest (Nic's half).

If we should be so lucky as to go over the target amount, we can set up a bank account for the extra, and those funds can be used in future for more hydrotherapy sessions, mobility aids, or other costs related to management of Nic's health.

I know times are difficult for everyone, and I realise this is a big ask, but it right now, it would mean a lot for Nic to have a little break, and it would make her feel supported, which is really important. At times this journey she’s on is really lonely for her.

Thanks for taking the time to read this, and if you feel you can help, whatever amount is most gratefully appreciated.