Hello everyone, I'm Lisa. I'm an educational and child psychologist, wife, sister, and 'aunty' in my family to a handful of amazing children. I've dedicated my life to supporting thousands of vulnerable children, young people and their families and carers across the West Midlands. I also work hard to support their teachers, schools and the wider community to understand and respond to their wide ranging needs.
November 2021 brought me the shocking diagnosis of Multiple Sclerosis. The life and the work that I love and that has brought me so much joy and fulfillment is under serious threat from this incurable and progressive disease.
Multiple sclerosis is an unpredictable and often brutal illness. I have already suffered damage to my central nervous system and vision. My wish is to be able to halt this terrible disease in its tracks , slow it down enough to regain my life and continue with my work for as long as I am able.
I have done lots of research since my illness began and this is why I am embarking on the journey to self fund HSCT through the well established and respected Ruiz Clinic in Mexico. HSCT (haematopoietic stem cell transplantation) is an intense chemotherapy based medical procedure that ablates your immune system and reboots it using your own stem cells harvested from your blood or bone marrow, which is the only medical procedure currently available that has halted the progression of the majority of patients undertaking it.
Since suffering what I now know to be my first relapse which hospitalised me in Autumn 2020 I've seen my own modest retirement savings dwindle as services promised me did not materialise for a significant period.
Out of desperation, having not been able to access NHS interventions, I've paid for help from a physiotherapist due to crippling nerve pain in my back and legs and poor gait and the need for a tailored exercise programme.
This had been promised me in November 2020. I've paid for an osteopath for advice and regular therapeutic massage to manage the spasticity.
I've paid for a psychotherapist to help me recalibrate to this new normal that MS has brought around. I've paid for a dietician to support me and educate me in dietary, supplement and lifestyle choices to try and reduce the ravages of MS a little. I've paid for a neurologist for further advice as I was not assigned an MS nurse until just a few weeks ago.
I was formally diagnosed with MS and promised treatment 'sooner rather than later' as stated in a letter from my neurologist back in November 2021.
Time means new relapses and new lesions in my central nervous system. MS DOES NOT WAIT.
I currently have a disability score of around 4 due totally to my MS . A year and a half ago I was at 0. The neurologist used the Expanded Disability Status Scale to establish this:
I am battling significant pain and frequent bouts of spasticity in my left leg and foot and also need a walking stick often to provide stability. I fall over ALOT!
How do I experience Multiple Sclerosis?
- Painful, burning or numb heavy legs
- Painful, numb or tingly feet
- Tingling and loss of feeling in left hand and arm
- Uncontrollable itching
- Tight painful crushing feeling around ribs
- Buzzing and ringing in ears/ tinnitus
- Balance and walking problems
- Bizarre sensations like stabbing or electric shocks
- Severe pins and needles
- Overwhelming fatigue
- Bowel and bladder problems
- Burning sensations through body
- Vision problems (Optic Neuritis)
- Heat intolerance
- Muscle stiffness/spasticity
- Drop foot - on a bad day I need a brace
My world has shrunk and I am no longer able to enjoy my photography, long country walks, dancing, taking the kids on days out to theme parks and on trips, and working on the allotment. I am no longer able to gift photography for my friends and family as I used to. Rapidly developing disability and overwhelming pain and fatigue have made this impossible.
When living with M.S., every morning when you wake up, you’re doing kind of a check on your body to make sure enough of you is working. To check to see if you can feel your legs, feet, arms and hands. A healthy person can’t imagine what it’s like to have that be a part of your daily experience.
I've gone from working an 8 or 9 hour day 5 days a week to managing 3 or 4 hours a day at most. My afternoons are largely now given over to health appointments, rest and recuperation. Fatigue is a formidable enemy.
Our family GP is an amazing source of support and doing everything he can to help and has been such an advocate in the face of tremendous difficulties accessing timely services.
My husband is an absolute angel and I am so grateful to him for his love, nurture and support.
I want to enjoy seeing and being part of the children in our extended friends and family growing up. I want to be well enough to celebrate all their milestones in life. My wish is also to continue helping those vulnerable children and young people I feel privileged to support.
I am advocating for MS sufferers across the UK and have been fundraising for the MS Society and fully intend to continue to do this for as long as I am able. This month we have been raising money for the MS Society to help support research in to finding a cure.
In the coming months we have a number of charity events being organised that will raise money for both MS research and for HSCT for myself.
If I am left untreated MS can result in more nerve damage and more symptoms. Starting treatment soon after you are diagnosed may help delay the potential progression of the disease.
PLEASE HELP - I'm reaching out to anyone who can donate what they can. NO AMOUNT IS TOO SMALL.
We have only 7 months left to raise £24,500 for HSCT. Myself and my family would be so grateful for your support.
Thank you for taking the time to read this. Please share this page.
Lots of love, Lisa and Jacob and family xxx
Original image created by my good friend, artist Charlotte Thomson-Morley