Help fundraise for Meg's specialist medical care!

*Updated target. Please read update below, thank you*

I’m Rob, Meg’s husband, and I’d love your help. My wife is in debilitating pain, her body and organs are no longer functioning normally and she is bed bound at only 31 years old. We can’t access the help she needs quickly enough on the NHS, so we need to raise money to see the specialists who can give Meg hope, independence and a chance to enjoy life again. We’re fundraising for specialised treatments, medical care and mobility aids.

Meg has suffered with an autoimmune condition since 2016 meaning severe daily muscle and joint pain. She has had a limited quality of life for years, but Meg and I never wanted to put anyone out by asking for help with medical fees. We now have no choice because she cannot see a future for herself in her current state. We are sadly at breaking point.

In December 2022 a Covid-19 infection during a hospital visit left her with some incredibly difficult health complications. She is now in constant and unrelenting pain; the doctors suspect this is because her nervous system has been damaged, causing her organs to be malfunctioning (I’ve gone into more detail below). The NHS backlog is now sadly failing her. She needs help. I’m terrified that the love of my life won’t be able to keep going for much longer unless she gets much needed, urgent medical care.

What I’m most desperately looking for is hope as she doesn’t have any right now. Hope that she will feel better again. Get back into the studio as a voice actor again. Go and see friends and family again. And not have to live in pain, discomfort and misery every day. Hope that we might be able to walk our lovely dog together again, start a family, and enjoy our married life doing the everyday things she has had to miss out on for such a long time.

If you’ve ever met Meg you’ll know just how special she is. She has always been an advocate for those in need, and has used her voice to try and help others in and outside her community. She cares fiercely for those she loves, she’s full of joy even in the hardest times, she’s intelligent, incredibly thoughtful and genuinely kind, and I just want to be able to bring that light back to her life.

So, if you could afford to give anything to help Meg in this desperate time of need, we’d be so so grateful.

Rob

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Meg’s Story

In 2016 Meg meg became disabled when she developed a painful autoimmune condition called Myositis, which causes severe joint and muscle inflammation amongst other things. This, coupled with other chronic pain conditions (Adenomyosis and Fibromyalgia), means that she struggles to do normal day-to-day activities. Some days are more manageable than others, but her baseline health is always poor, and she is in constant pain and discomfort. This obviously affects her ability and frequency to work, and has had a devastating impact on her mental health. She used to be a theatre maker and actor, touring with her own physical theatre show, and had an active social life. But as her condition got worse, all the things she loved slowly disappeared, and she was forced to miss out on a life that most people take for granted.

Treatment for her Myositis requires immunosuppressants and steroids. She was just about coping until covid hit and everything changed. Lockdown had an enormous impact on her well-being, and posed a major risk to her life. Doctors ordered Meg to take maximum precautions, meaning she was completely isolated from the world for 18 months and only left the house for doctors and hospital appointments for three years. Meg and I spent long periods of time apart from one another whilst I continued to work in London. Meg’s entire life was a terrifying and lonely existence, spent away from almost everyone she loved and she didn’t hug or touch anyone during this time.

Six jabs and boosters later and Meg and I were back together in London, still with a life very impacted by covid.

We managed to get married in July 2022 after rescheduling it twice (because it wasn’t safe in 2020 and 2021) and with a thorough testing plan, Meg on lots of morphine and our very willing, considerate guests, we managed to have a covid free celebration which was probably the only normal feeling day we’ve had together since the beginning of the pandemic. To be honest we haven’t had another one since. That day was very painful and took months for Meg to recover from despite being on steroids, immunosuppressants and heavy pain relief. But it was worth it for Meg, to have one special day, to finally have memories with loved ones. Back then, she still had hope there would be more good days to follow, but there are no good days now.

Breaking point: a Covid-19 infection caused incredible damage to her body and nervous system.

In late December 2022 Meg caught covid (after a routine procedure in hospital) after nearly three lonely, isolated years avoiding it. She was given antiviral treatments and managed to fight off the initial infection, but suffered extreme tachycardia, fatigue and other complications that forced us multiple times into urgent care.

This is when the most recent set of health complications first started, and the reason for this Go fund me page.

The Doctors believe that because of her autoimmune condition, coupled with being on immunosuppressants, her body suffered nerve damage from the infection.

The body has something called the Autonomic Nervous System that is responsible for doing all the things we don’t have to think about; essentially sending signals to all your internal organs for how to behave. When it’s damaged your organs don't work properly which can lead to deep seated infections, complications and extreme chronic pain. For Meg the damage appears to have affected her heart, lungs, blood vessels, stomach, adrenal glands, bladder, intestines, liver and kidneys. Each of these issues need to be treated by a specialist and at this stage Meg has not had any appointments booked in on the NHS despite trying since January. The money we are raising is needed to pay for each specialist individually, which is now the only way Meg can actually be treated.

She has constant tachycardia, infections, tight and painful breathing, agonising chest and stomach pain, severe nausea, dizziness, migraines, bowel problems, adrenaline dumps, blood pressure drops on top of her existing joint and muscle pain. For Meg it seems that every part of her body is behaving in the wrong way. She has days where she can’t eat, can barely talk or open her mouth from the nausea, and describes the feeling as if her body is dying. Every single part of her is in agony. Her heart rate shoots up to dangerously high levels whenever she does something as simple as standing up, and is often as high as 170-180 bpm when she is just sitting down. She can’t switch off from this level of pain anymore. She’s admitted to me recently that she's not able to continue like this if things don’t get any better. She doesn’t enjoy good days anymore, just really bad days and the occasional slightly-less-bad-one.

We’ve been in A&E 16 times since March, and admitted on multiple occasions. In May Meg suffered covid a second time (contracted again in hospital) which has made these symptoms even more debilitating than they were before. She’s at the stage now where she is in so much pain, discomfort and nausea, it is often impossible for her to even speak.

Just one of the clinics specialising in these complex dysautonomia conditions (the PoTS clinic) has a 1 year waitlist to be seen as an NHS patient. This is because an estimated 250,000 people in the U.K. have developed PoTS from a covid infection. Meg is still on the waiting list for this clinic, and the other clinics which deal with each specific organ dysfunction have waitlists just as long. We’ve already waited 7 months, and I am worried that waiting another year to be seen for just an initial appointment is much longer than the fight Meg has left in her.

What we need help funding

Consultations

MRIs

CPET

EMG

Gastro, bladder, adrenal gland, migraine, nerve and cardiology investigations

Expected surgeries and treatments

Powered mobility aid

As you can imagine, Meg has reached breaking point with the impact of her health complications, as well as the prospect of waiting over a year to see not only the PoTS clinic but other specialists who can treat her various symptoms on the NHS.

To give her any quality of life back we need to raise as much money as possible for all the necessary testing, surgery and treatment plans privately. We have lived off one income for the past three or four years and don’t have any savings we can pull from. She’s been recommended by a private consultant (who we managed to see as a one-off) to see specialists in each area to help treat all of these symptoms, but it’s adding up to a frightening amount of money to do so, and sadly we don't have the funds to do more than the odd consultation.

We are also looking to get her a powered mobility aid that will give her a sense of freedom back, as her conditions will likely have to be managed for the rest of her life. So, it’s important we look at more long term solutions to enable her to get out independently and back into work, and regain the freedom that most of us take for granted.

Throughout all of this, we cannot express how truly grateful we are for the NHS and how unbelievably kind and hard working all of the doctors, nurses and paramedics are. They have supported us both in our darkest moments. The NHS, and everyone who works for it, deserves so much better than the government is giving them. We are being forced into the route of private care out of desperation.

**We have had a lot of estimates to the cost of this care but being such a difficult and widespread investigation the end goal might be adjusted to reflect any new quotes we receive. Any surplus funds will be redirected to PoTS / Dysautonomia Charities.**