Not to be outdone by guys growing a mo for Movember, Rachel Monkman shaved her hair for Invest in ME. Husband Steven Monkman had written:
My wife is raising money and awareness for Invest in ME (IiME) as she has been ill with myalgic encephalomyelitis for eight years nearly and she says: without the support of my husband, children, and my mum and the friends on the Invest in ME facebook group I may have given in. I have decided to do something a little mad like shave my hair as it’s really the only thing I can do. I would love to run a marathon or climb a mountain but unfortunately I’m too ill to do anything like that. Movember is when men grow beards and then shave them off so I shall be shaving my hair off so please dig deep and give generously as we need every single penny you can give. Many thanks to IiME for the fantastic work you’re all doing on the research, kind regards and thanks for donating. Thanks for taking the time to visit my JustGiving page – https://www.justgiving.com/Rachels-headshave
Rachel tells her M.E. story ..
In February 2008 age 28 I started with a case of a cold just before we were due to go away on holiday. The first few days I spent fully clothed aching from head to toe and felt dreadful. I managed to get through the holiday and felt slightly better when the warmth of the sun was on my skin but the aches just wouldn’t shift. Once home all the symptoms came back with a vengeance and I went to see the GP who dismissed it as a virus, rest up and have fluids was advice so I did. I felt like every part of my body was on fire with sweats one minute and the next I would be freezing cold and shivering but clammy and cold to the touch. Every single bone in my body was hurting so much I knew that this wasn’t just a virus.
After many fob offs from my GP and six months of restless nights and struggling with pain, my job suffering as a consequence of the symptoms arising from whatever was happening to my body, I took my mum to the GPs and begged them again to do something as I couldn’t cope with what was going on with my body, restless sleeps and feeling like I hadn’t slept at all and days at work where I couldn’t find words to describe the simplest of things, lots of nerve pain, brain fog, lack of concentration, sensitivity to noise and light, sore throat, swollen glands, neck shoulder and back pain. I was then given a blood work up, all came back clear except vitamin D was low. I was given some chews to take and sent on my way. After six weeks I went back and begged for help, I wasn’t getting better I was getting worse. The GP decided I had fibromyalgia and that exercise would help me. I had two children aged 9 and 6 and worked school hours and ran a home, never stopping from getting up to going to bed but tried to incorporate some jogging in-between but I just didn’t have the energy. Two years passed with me working three weeks and then been off sick for three months over and over for these two years, by which time I was a wreck. I had to give up my job, spent most days in bed or on the sofa, had barely any energy to do anything but breathe. I would do the school run and climb back into bed until pick up time.
I started to see a new GP in 2010 who read my notes and actually listened to me. She decided to send me for an MRI as she thought it was either MS or ME. The MRI came back clear and I was referred to a CFS/ME clinic by the neurologist. After a two hour appointment with them and examinations, a primary diagnosis of ME was given with secondary fibromyalgia. I was asked which was worse, fatigue or pain, I couldn’t say that one was worse than the other as I truly felt like I could die I felt so ill. I was told I would have ten sessions with a occupational therapist, three on my own and then the rest with a group talking about coping strategies. I managed one appointment with the OT and after that I couldn’t get out of bed, let alone travel 54 miles round trip for nine more weeks and was given funding for home visits. The OT came out to me once a month using what I know now as the pacing technique. I was struggling to sit up or eat meals let alone do anything else so never progressed with them. The GP I’ve had for the last seven years has tried to help keep me as comfortable as possible and although she couldn’t do much she always made sure I knew that she believed me.
In March 2012 I went into total retention of the bladder which resulted in a year long indwelling catheter. This caused so much pain and I was put on morphine and bladder spasm drugs. Further tests revealed I have another incurable illness called Fowler’s syndrome – difficulty in passing urine and urinary retention due to the bladder’s sphincter muscle’s failure to relax. I have had two supra pubic catheters fitted and both popped due to severe spasms and in July 2014 I had a sacral nerve stimulator implanted into my but cheek to try get the nerves working again but no success. In October 2015 I had the battery placed in the opposite but cheek but as of yet this hasn’t worked either so I am now probably looking at having to endure more pain by having to have anorther supra public catheter fitted so I can urinate.
My life as an ME sufferer is confined to beds, the slightest thing completely wipes me out, my husband is my full time carer and the love of my life. I have given him the option to leave many times as I feel such a burden to him but he says he is not going anywhere. I live each day for him my children Chloe and Robbie and my mum, without them the choice would have been a easy one to make between living with ME or not. I wanted to help get the total up for the Invest in ME Rituximab trial as I don’t want things to stay as they are for ME sufferers. I felt the only thing I can do to help raise money is shaving my hair off and was really hoping to raise much more than I have so far. Thank you to those who have donated to this worthy cause for my hair shave and anyone who can spare even a pound it really does help. Thank you for taking the time to read my story and wishing you a pain free day. Rachel x https://www.justgiving.com/Rachels-headshave
Big thanks to all involved in this fabulous effort by the Monkman family, friends and supporters, raising vital funds for Invest in ME Biomedical Research as well as great awareness. The deed was done on 30th November and the following day Rachel said, “I’d really just like to say I’m so overwhelmed with the generosity of friends on support groups, and how my family have supported me on this journey. I am now getting rotten payback but I would do it all again without hesitation and apart from the cold head I love my new hair do. £1000 raised so that’s good and hair gone to the Little Princess Foundation for children who suffer from cancer to use for wigs = win, win.” You can watch the video here – Rachel Monkman’s Head Shave for Invest in ME.
* Let’s Do It for ME logo products – http://ldifme.spreadshirt.co.uk
* Invest in ME wristbands – http://www.investinme.org/IiME-Wristbands.htm
* Invest in ME Rituximab microsite – http://www.ukrituximabtrial.org
* About our take on Movember awareness – Nomenbar for M.E.
* Rachel and Steven Monkman on JustGiving – https://www.justgiving.com/Rachels-headshave