Help my transition to living as an newly-disabled person.

Hi, my name is Helen and I’d desperately like your help in raising money to adapt my new home. My story. Approximately 3.5 years ago I was working as a trainee Probation Officer, loved long hikes, volunteering with Norfolk Lowland Search & Rescue, and wild swimming. Unfortunately, I developed a degenerative neurological condition that has progressively worsened. Approximately a year ago, I started using a wheelchair sporadically for distances over about 100m. In the past 5 months it has got worse very quickly.

Originally, I was misdiagnosed with fibromyalgia. I trusted that this diagnosis was correct; so when I developed new symptoms, I attributed it to that. Eventually, the symptoms became increasingly debilitating and bore hallmarks of a neurological disorder. I went to my GP and we both thought that I probably had MS. In December 2023, I attended an appointment at the Neurology outpatients at NNUH, and I was told that it was still fibromyalgia, and not MS. I was still deteriorating. I went back to my GP in February, and requested another, urgent referral to the Neurology department. On 25th March, I attended another outpatient appointment. I was seen by a different consultant, and I was told I had functional neurological disorder, a psychiatric condition which manifests with physical symptoms. No information or signposting was provided by the hospital. Again, I was unconvinced by the diagnosis.

I’m writing to you from my hospital bed. I was unable to stand on 10th April, and was taken into A&E on 11th April. On Wednesday 12th June, after much testing, I received my diagnosis: chronic inflammatory axonal polyneuropathy, (CIAP). This came as a surprise to my consultant, and myself. We were expecting the results from a nerve biopsy to come back from Addenbrooke’s showing the rare disorder; chronic inflammatory demyelinating polyneuropathy, (CIDP). CIAP is astonishingly rare, to the extent that I can only find one article about it online, and I’ve met specialist neurology doctors who have never heard of it. My results showed that the nerve damage is severe and extensive. I started treatment on 13th June, with additional treatment starting on 19th June. These are planned to continue for the next three months.

I’m a proud, independent Norfolk woman who wouldn’t ask for your help unless I genuinely needed it. I’m going to have to move to accessible accommodation. This will help me as it’ll allow me the space to move around, it’ll have an adapted kitchen with lowered work surfaces and appliances, a profiling bed, and a wetroom. I’ve also lost 60.9kg/9st 8lbs in the past nine months, in an attempt to improve my mobility and help a carer if I needed one. My life is currently full of massive upheavals.

These are the large adaptations to the property, the things the Council will provide. I now need to put in place the smaller items that will allow me to retain my independence and keep me safe. I can’t feel my body from the top of my head to the tips of my toes. I’m unable to feel superficial pain, temperature or touch. My brain doesn’t know where my limbs are, meaning my legs are paralysed and my arms are partially paralysed. I can mostly look after myself, but with specialist items that I don’t have. For example, the bed will need huge flat sheets, I can’t use a kettle so I’ll need a Burco-type water heater, digital thermometers for the shower and sink, a shorter wardrobe to hang my clothes and Amazon Alexa “smart” controlled lights, plugs, TV etc. There’s a huge list!

I would be incredibly appreciative of any funds you can spare. I know times are hard for everyone, but I cannot describe how badly I want to start the next chapter of my life thriving as a newly-disabled person. Having a home which is easy to live in will improve my physical and mental wellbeing, and my quality of life immeasurably.

I’m not looking for sympathy, I’ve just been very unlucky. However, I’m a believer that things happen for a reason and every day I look for the silver lining. I would like to use my experiences to help others in the future.

Thank you so much for reading my, (very long!) story. I’m determined to make the absolute best of a bad situation.