Desperately trying to maintain my independence....

Many of you will know that I have been increasingly unwell since April 2024 and have been struggling to receive any kind of help from NHS providers meaning I’ve had to rely on private health care providers to find answers, with my total costs now passing £4000.

In June I saw a menopause-specialist private GP, who told me that – at 44 years old – I was at least two years postmenopausal, after experiencing early menopause which was never picked up on. Since then, my body has been struggling to function without essential heart and body protecting hormones, leaving me at risk of bone and cardiovascular issues in the future. She helped me get on an HRT regime that will hopefully offer me the protection I need as I get older.

I also started hydrotherapy sessions to help me relearn how to walk again after I developed trouble walking properly due to pain and, I know now, leg deformities.

In July I started seeing a women’s health physiotherapist, who told me that I have developed full-length diastasis recti (a separation of my abdominal wall muscles), related to incisions made during a keyhole procedure I had done at the start of April, which has caused significant discomfort and physical abnormalities.

At the end of November, I finally managed to get a rheumatology appointment at the end of November who arranged for me to undergo an electromyography (EMG). This showed that I have neurogenic muscle damage - caused by related nerve damage - in muscles connected to three nerve root locations in my spine. I was told that I would have an MRI arranged and a neurology referral sent through for further investigation, but I wasn’t told when this would happen. Since then, I have been told that I’ll have a femoral MRI on 17th December but I won’t get the results until my neurology appointment, and I’ve been told that my referral won’t be assessed before the 10th of January meaning it’s likely I will have to wait a month or more to get answers.

After this appointment I realised that that I couldn’t wait any longer to get the answers and help that I need.

On 2nd December I went for a lumbar spine MRI, which was paid for privately thanks to the support of a wonderful friend. This showed that I have moderate (grade 4/5) degenerative disc disease and a mild bulging disc in my L4/L5 vertebrae. This isn’t particularly bad by itself and, if it had been caught early enough, probably wouldn’t have caused any issues. Unfortunately, because I couldn’t get anyone to take me seriously earlier this year when it first caused issues, it has been left untreated for long enough that it has begun causing the neurogenic changes in my leg that the EMG picked up. The nerves has become so irritated that they'd contracted, pulling against the related muscles which, essentially, was twisting my legs outwards.

Luckily, thanks to an intensive treatment routine I devised – consisting of TENS therapy, gentle stretching, massage and acupuncture – I have managed to release most of the nerves that have been trapped in my lower spine which has caused a significant reduction in pain and has meant I am able to walk better but unfortunately it seems that permanent nerve and muscle damage has already been done in my legs and abdomen, where the loss of muscle mass has meant I'm not able to fix my diastasis recti as I'm not able to build muscle mass.

In addition, I am now experiencing symptoms related to the neurogenic changes identified in my arm muscles. I am losing sensation, dexterity and function in my arms with significant muscle loss, including in my hands, which is affecting my strength and stamina and therefore my ability to do many things – I often struggle with household tasks such as vacuuming and now need to use a laundry service every two weeks as the process of washing and hanging out can often take all day for me to do. I also experience difficulty with things involving fine motor control such as tying shoelaces and using cutlery, things I already experience difficulty with due to my dyspraxia, and I often drop things because my fingers don't always do what my brain tells them to do.

My main hobby used to be knitting but I’ve not been able to do this for months now, as I can’t even hold large-sized needles and can no longer manipulate the yarn with my fingers. I’ve had to write this using speech to text as I can no longer type for very long. I even have to wear wrist supports to do colouring, which is about the only hobby I have now, and occasionally have to strap the pen to my hand if I’m having trouble with my grip.

Realising the urgency of the situation - and the likelihood that I won't get any help from my neurology referral for at least a month - I've had to pay for yet another private MRI which I am undergoing on the 15th of December. This one will focus on my cervical spine where the neurophysiologist who performed the EMG suspects I have trapped nerves similar to the situation in my lower spine.

I have spent the majority of this year alternating between being terrified and being angry at not being able to access the help I needed and being forced to spend almost my entire life savings on private health care, without which it's very possible I wouldn't still be here. There have been some very dark days where I've been unable to see any light at the end of the tunnel, but I've somehow managed to keep going and I can't stop now.

My physiotherapist has been my saving grace this year, as she has not only listened to - and believed me - when I've struggled to explain my symptoms, but has also been in the position where she's been able to help me. It costs £85 per session and I'm currently undergoing two sessions of acupuncture a week as we try to improve the health of my nerves and save as much muscle as possible, so my target amount reflects a week's treatment.

I have always struggled to ask for, and accept, any kind of help, as my stubbornness and desire to stay as independent as possible often gets in the way. However, I have now got to the point where my pride has vanished along with my ability to function normally.

I don't expect anything from anyone, but if you can spare even the price of a pint (Northern prices, not London ones!) I would be very, very grateful.