Please tell us your name
I’m Maggie aged 41. I’ve been married to John for 20 years and we have 2 children Rebekah (19) and Reuben (17). Rebekah is in the photograph with me, when during my rehabilitation she made a surprise visit on her way to Prom night. We live on a smallholding in SW Scotland.
Please can you tell us what your condition is?
I’ve got a condition called Miller Fisher Syndrome which is a variant of Guillain-Barré Syndrome. It’s a neurological autoimmune disorder. MFS mainly affects the cranial nerve but does affect the full nervous system.
The day I took ill, I’d been at the doctor with my son. The GP he saw noticed I wasn’t my normal cheerful self. She said she had a spare appointment just after Reuben. I agreed to wait and see her. She took my BP as I was feeling dizzy. She ran and got another GP who did the BP again and after a very short discussion he told me “your in stroke territory “. Later that day my legs were like jelly and I was struggling to walk. The following morning I woke with no feeling in my arms, legs and I was talking very strange.
How long have you had this condition?
I took ill on 11 May 2018, and admitted into hospital on the 12th May. I came out of hospital 12 weeks later after a long 9 weeks in neurological rehabilitation where I had to learn everything again from opening my eyes to learning to walk.
Can you tell us what treatment you have had?
Once I was rushed to ICU, I was put on a drip of IVIG (immunoglobulin) for 5 days. I was one of the lucky ones who was given the treatment of a 5 day infusion. There is the smallest amount of IG in blood, and if blood is donated, it takes many donations just to treat 1 person with IG. It is the only treatment for GBS and related variants. Depending on when/if you receive this transfusion depends on how quickly you recover. I remember asking the ICU consultant (in the best way I could due to the facial paralysis) “what happens now?” and his reply was “we wait". No 2 cases of the illness are the same.
How has your life changed since diagnosis?
Due to full paralysis including my face, eyes and limbs I am unable to drive and I walk with a limp. I also suffer with fatigue. I was at the consultant recently and asked him about why my arms go hard, sore and feel like burning lava, and he said that due to the muscle damage they contract and go hard. Other than the above things I look “normal”, but believe me I’m far from it.
Have you found any alternative therapies that help?
I tried a tens machine and also tried taking hemp oil, but didn’t find that to help me.
What would you like people to most understand about your condition?
There is very little known about GBS/MFS by anyone. All I want you to be aware of, is be careful when you or others get the common cold or a virus as that is one of the causes GBS/MFS.
How can someone best help you?
Just treat me as me. I’m not the same person by any means, but regardless of if you knew me prior to MFS or not just look at me as Maggie.
Has your condition had an impact on your mental health?
Most definitely. I cant cope with normal life some days. I’ve lost many friends since being ill. People who I’ve known for years, but I no longer have a filter and don’t/can’t think before I speak. Sometimes I feel very lonely. I’ve lost my job, my freedom, my life, but now the “new me" is how I am and I need to accept that.
Are there any positives to having your condition?
I have made some amazing friends. I’m in touch with 2 others from rehab who both had slightly different variants to me. I get to spend more time (when I’m able) to spend on my hobbies of spinning and crochet. I also get to spend time with Reuben who’s on the autistic spectrum as we both have the same joy in showing chickens.
What is your favourite way to distract yourself?
If I’m not well there is nothing I can do to distract myself from the pain and numbness, but on a good day I spin and crochet.
And finally, how does being part of the Braver community make you feel?
It makes me feel that I’m not alone. Plenty of others suffer in many different ways. I need you lot to keep me going (and my beautiful Victoria bear who likes to travel with me wherever I go).