Tag Archives: mast cell

“I have a love-hate relationship with my benefits”

Josie, from Bristol, was a nurse until 2008 where she developed a number of impairments which affect her health and mobility.

She has most recently been diagnosed with Mast Cell Activation, a condition which affects immunity and increases the chances of anaphylaxis attacks.

In this blog, she talks about her journey of getting different benefits she needs and the anxious days where her payments stopped completely.

I have a love-hate relationship with my benefits. I am grateful that they exist and that I can live as a disabled person, but I was a worker and I still find it hard that I can’t earn my own money.

When I became ill in 2008, I had just got a new job but hadn’t started yet. After a couple of weeks of no income, I went onto incapacity benefit . This was £ 73 a week. It was so little. Out of that I had to live, pay towards my rent and support my children.

My most heart-breaking moment

I did a depressing budget where I couldn’t afford to see my kids or contribute to them at all. My son asked if I was coming for half term to see him. I had to say no. It was my most heart-breaking moment. At this point, I had been denied three times by Disability Living Allowance (DLA) and was awaiting a doctor’s visit at home.

In 2011,  I was moved over to Employment and Support Allowance (ESA). I filled in the 40-page form and got all my paperwork together. I was so worried. I was put in the work-related activity group (WRAG). This involved a trip to the job centre on my birthday. I had two people with me, wore a face mask and hoped I wouldn’t need to get out of my wheelchair and need the toilet.

Josie, a disabled woman, wears a face mask to protect against allergens
Josie wearing her face mask

In 2012 , the job centre invited me again. I was now single and having more reactions so they rang me. I was so so nervous. They put me in the support group and realised I was too unwell to study and other options like office work were a no and I couldn’t even go in a charity shop due to my allergies no matter work in one. So I was released into the utopia of the support group.

It made me anxious and worried

In 2012 , I was reassessed for DLA. My three-year award was up. Reassessment meant a full assessment as if I was applying for the benefit from scratch. I thankfully had an amazing social worker who I will be forever grateful for. Between her and the Occupational Therapist manager, I got all the assessments and paperwork together (again) and was awarded five years. This is due soon and with the move to Personal Independence Payment (PIP), I am not looking forward to it.

This year a work capability form arrived. At first, I thought it was a mistake. I rang, it wasn’t. I can’t write easily or well so I started answering the questions into my laptop. I was worried and scared and avoided dealing with it for a couple of weeks. It made me anxious and worried.

I knew I wasn’t going to be able to achieve it in the time given, so I rang. I was told to get the form back when I could, with no mention of money stopping. Two weeks after the date on the form I had it ready and was going to get it printed by my carer as I get two hours once a week for errands. Then I missed a payment and that day had a letter saying my ESA had been stopped. I rang and it was confirmed.

Josie, a young disabled woman, following a reaction where her face has swollen and become red
Josie following a reaction with swelling and redness

I asked for help, this took five phone calls. The first said no we don’t have your case anymore, ring ‘X’. I rang ‘X’ and they said ring ‘Y’, ‘Y’ said ring ‘Z’ first. Eventually, I broke down in tears, sobbing. A man rang and I answered the questions (including really personal things like how heavy my periods are, how often I need the toilet at night, if I was continent etc) and he filled in my form for me. He reinstated my money immediately. I was told a copy of the form would be sent for me to sign but it never came. But my money continues.

In the four days it took for me to get help, I had a p45 and a letter saying my housing benefit had been stopped. If I had been in hospital or unwell and not able to do the chasing, my life would have completely fallen apart and I would have lost the roof over my head.

Two days after the phone call I had an anaphylaxis. Stress makes it more likely I will have one. Anaphylaxis is not a minor allergic reaction, it’s where you swell up, your throat closes and your blood pressure and pulse drop. This happens quickly (within three to five minutes) and I have to be ready to give myself an EpiPen, otherwise, I would die. I have had to have 78 EpiPens so far and I will shock again.

What needs to happen next

My needs are documented in so many different places – if only these records could be joined up so I don’t need to repeat myself. I’m eight years in now and I feel battle weary.

We need to look at this Work Capability Assessment and find a more holistic, compassionate way forward.

Visit Josie’s blog site to learn more about Mast Cell.

If you have any questions about benefits or employment, contact Scope’s helpline where we provide free, independent and impartial information and support to disabled people and their families.

You can also start or join a discussion on our online community.

Natasha Coates, the gymnast who is allergic to exercise

30 under 30 logo

This story is part of 30 Under 30.

 

Natasha Coates is an elite disability gymnast. She has a condition called Mast Cell Activation Disorder (MCAD). It means that she is allergic to a long list of different things, including exercise.

For 30 Under 30, she talks about disability sport and how she manages her condition whilst doing gymnastics.

I started gymnastics when I was eight at my local leisure centre.

When I was 18 I suffered a life threatening allergic reaction. I went into anaphylactic shock completely out of the blue and we didn’t know what had triggered it. Then it happened eight times in two weeks and it’s pretty much not stopped since. I’ve probably had over 250 life threatening allergic reactions since then.

I’d been doing gymnastics for a long time and I switched to disability gymnastics at 19 because I was unable to keep up with mainstream gymnastics. Disability gymnastics gives me the opportunity to still train and compete safely.

It was difficult to go from being perfectly fine one day to having this condition the next. It happened pretty much overnight. I found it difficult to refer to myself as disabled, I didn’t really know what it meant. Doing disability sport really made me realise who I was and what I wanted to do with my life.

Natasha, a young disabled woman, lies in a hospital bed holding her thumb up and smiling

Adjusting to train

I’ve made a lot of adjustments to my training because of my condition. I can’t train nearly as much as I used to. I maybe do six or seven hours a week. Most gymnasts do 30.

So when I exercise I lose the feeling from my elbows down and knees down which makes it difficult to feel the equipment. So when I’m on bars I can’t actually feel my hands catching the higher bar, I can only feel the drag down if I’ve caught it. So it creates quite a few barriers, especially whilst doing gymnastics!

I’m incredibly hard on myself and sometimes I do think I can do everything like everybody else because I train with mainstream athletes so I try to keep up with them. I get frustrated when I can’t.

Natasha, a young disabled woman, leaps into the air during a gymnastics performance
Photo courtesy of B C Gym Photos

The British Championships

When I competed this year I was waving at the crowd, showing everyone what I could do. I placed first on floor and I’d only started tumbling a few days before. I’d just got out of intensive care 12 weeks before that.

I came off the floor and just burst into tears. My best friend is my coach as well and she knew the lyrics to the song I’d chosen and what it represented and we were literally just sobbing into each others’ arms.

I’m not aware of the crowd when I’m performing because I’m so focused, but when I did the end I could hear the audience. I presented to everyone and people came up afterwards saying my floor was amazing and it was really nice to see the emotion. After all the work and effort that I’d put into that floor routine it was really nice for them to feel it as well.

Making way for the next generation

I’d love gymnastics to be in the Paralympics and to say I was going to Rio but unfortunately it’s unlikely to happen in my career. There’s just not enough of us and there’s not enough international squads. Hopefully it will get there. I’d love to see it in my lifetime. I feel like the more I raise awareness of disability gymnastics, the more I can pave the way for the next generation.

I’d recommend anyone to try disability sport. You don’t have to be representing Great Britain, you don’t have to be good at it – if you’re enjoying it that’s all that matters.

Natasha, a young disabled woman, flips upside down during a gymnastics competition
Photo courtesy of B C Gym Photos

Natasha joins us for a Facebook Live session at 4pm on Friday 24 June.

She is sharing her story as part of 30 Under 30. We are releasing one story a day throughout June from disabled people under 30 who are doing extraordinary things. Keep up to date with all of our new stories on our 30 under 30 page.

To find out more about Disability Gymnastics and how to get involved, visit the British Gymnastics website.

Header image courtesy of Alan Edwards