‘I’m only 29 but feel like I’m 69’ Ilkeston woman speaks on living with debilitating conditions

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Rachael Towle can’t remember the last time she had a pain-free day.

The 29-year-old has been living with Idiopathic Intracranial Hypertension (IIH) for the past six years, a condition that causes pressure on the brain. Two years ago she was also diagnosed with ME, and Fibromyalgia, all conditions which affect her ability to live life the way she used to. Before she became ill she enjoyed hikes with husband Jim, 35, but now she struggles to walk to the end of their garden.

The couple, of Beatty Walk, Ilkeston, have started a fundraising page, asking people to help them pay for an electric wheelchair and adaptations to their home, to enable Rachel to get her independence back. They currently rely on Jim’s wages as a self-employed tiler as Rachael lost her job when she became ill.

When she was first diagnosed in April 2009, just months before the couple got married, they were told by a doctor to ‘Google’ the condition because they didn’t know much about it.

Jim said: “The last two years have seen her go dramatically downhill. It has been a battle against everyone, every step of the way. What I am trying to do is give my wife some of her independence back and hopefully the spark in her eyes.”

The couple said it took 18 months to get Disability Living Allowance and that was only after the case went to a tribunal last August. They don’t feel that the amount they get is sufficient considering how poor Rachel’s mobility has become.

Jim said the last few years have been extremely stressful and he is working seven days in order for them to keep their house.

It what has been a tough few years for the couple, Rachael suffered personal tragedy in 2007 when her brother Martin Beard was killed while on duty with the RAF in Iraq.

It was one day in 2009 while she was in the kitchen reading a letter that her life changed forever. She said: “All of a sudden it was as if someone had turned off the lights.”

“Before I got sick at the age of 23 I was outgoing. Me and Jim used to enjoy hiking, walking up Kinder Scout and geocaching (an outdoor recreational activity).”

“After I became ill, for about two years I was partially sighted because the pressure on my brain had caused damage to the optic nerves. I was then diagnosed with Fibromyalgia and ME. In January 2013 I lost my job and my health has taken a nose dive. Now I can barely walk to the end of my garden without being in pain. I can’t do the small things I used to take for granted like walking my dog.

“I would like to be able to do things again but something as simple as clothes shopping just gets too much.

“I have a friend who is paralysed from the waist down who has two powerchairs. She lent me one for the day to go to London. A couple of weeks later she lent it me again so that me and Jim could go to Nottingham Castle and it was such an eye-opener and something I had not been able to do.

“In two years I hadn’t been out of the house for more than half an hour but I was out for four to five hours at a time. It felt so good and I could see how I could get a bit of independence back instead of looking at the same four walls day in, day out.”

Rachael said she has been told by the Department of Work and Pensions that she needs tell them things have changed in order to make a fresh claim for benefits.

She said: “I filled in the paperwork but was embarrassed because of the stigma around people claiming benefits.”

The IIH has left her with mild brain damage meaning she forgets things.

She said: “Imagine if you stayed up for three days. That’s how tired I am all the time.

“I’m 29 but feel like I should be 69. I can’t remember the last time I had a pain free day.”

A Department for Work and Pensions spokesman said: “Entitlement to Personal Independence Payment (PIP) is based on a need for help with daily living and mobility activities. Decisions are made by healthcare professionals following a thorough assessment process including engagement with the claimant’s GP.”

To support Jim and Rachael’s fundraising, log on to gofundme.com/l56vh0.