12/05/2015

MEAM: M.E. Awareness Day: A Spoonie Interview.

For those who don't know, for M.E. awareness month (May) I am writing a post, despite my severe illness, every single day. I'm doing this to raise money and awareness for the neurological chronic illness M.E. and the charity Invest In M.E.in the hope that one day we may find a cure. So, I'd really love if you'd head over to my JustGiving page and sponsor me throughout this challenge. Thank you.


As it's M.E. Awareness Day today i thought it would be the perfect time to share this interview with the lovely Katharine. It meant a lot to me that she wanted to help me out throughout M.E. awareness month as she's currently at Uni and going through her exams so Thank You so much! I'm sorry that it's so long but i thought who better than someone who's been through severe M.E. and come out the side of it to share what this terrible illness is like. I feel i can really relate to Katharine because of the place she's been, i'm currently very ill, bed bound, can't move, barely talk, basically life is shit, and she gets that more than anyone. Katharine is by no means 'recovered' (if you ever can be), she has to be very strict with her routine and pace herself carefully so she doesn't suffer a relapse. So, as you can imagine, she spent many a precious spoon in doing this interview with me. You should all go check out her blog Katharine and M.E., she explains M.E. so elequantly and is one of the kindest people i have ever known. And, if you're a spoonie and have no idea who Katharine is, then read this post, head over to her blog and you'll be completely inspired.

  • Me - How long have you had M.E. and how long since you were officially diagnosed?
Katharine - I’ve had M.E. for pretty much exactly 6 years and 8 months. I got a viral infection (which was basically just a bad cold with a nasty sore throat) in September 2008 and I never recovered. I got very, very poorly pretty much immediately after the virus so I was diagnosed quickly by a kind paediatrician, in January 2009.

  •  Me - How did your family react to this news and what did you know about M.E.?
Katharine - It was such a shock for us all, as I went from being very active and doing judo, playing rugby, enjoying music and playing the violin and the piano to a good level one minute, to being effectively an invalid the next. I think in many ways it was worse for my parents than for me as I was just too ill to really notice a lot. We knew very little about M.E. – I can actually remember a friend suggesting that I might have M.E. but I told them not to be ridiculous because I was much too ill to have something referred to as 'Chronic Fatigue Syndrome'. I really couldn’t have been more wrong!

  • Me - Do you have any advice for newly diagnosed M.E. sufferers?
Katharine - Rest, rest, and more rest! Rest really is best in the early stages of the illness (that is, until we can finally get some proper biomedical treatment!) Then gentle pacing – hopefully with a kind, sympathetic and understanding doctor.

  •  Me - When did you become severely ill and how long did it last?
Katharine - I became severely ill within weeks of getting the virus that left me with M.E. and it took many months before we saw any progress, and much longer before I was able to get back to school (we increased very slowly from 10 minutes every afternoon, to eventual part-time attendance). At the time it felt like an absolute lifetime, but looking back on it now I realise how lucky I was that I wasn’t severely affected for longer, as many sufferers suffer that horrendously (and much worse!) for decades. Though I’ve had nasty relapses over the past 7 years – the worst of which was in 2013 – and have developed complications including complex seizures, the time between September 2008 and Summer 2010 was truly the worst I have ever felt. Severe M.E. is truly life destroying and my only wish for my future is to never experience those hellish extents of illness again.

  •  Me - Can you tell me a little about what it was like?
Katharine - It was absolute hell. I was in constant, agonising pain (both muscular and neuropathic), I was highly sensitive to noise, light, and touch and often couldn’t bear to have my family in the same room as me. The exhaustion was bone-crushing and affected every part of my body: I regularly struggled to speak (particularly first thing in the morning) as the muscles in my face and diaphragm were affected, and it often felt as if I had an iron belt around my ribcage as breathing was such a struggle and so painful. I couldn’t sleep at night (but my routine forbade me from sleeping in the day!), my body temperature was all over the place, my muscles spasmed painfully and I struggled to think coherently as my brain was so foggy. A major symptom was feeling very faint, lightheaded and dizzy, which worsened when propped up with pillows (I now know this to be orthostatic intolerance/POTS: the dysfunction of the autonomic nervous system to control heart rate and blood pressure, which is common in M.E. sufferers).

  • Me - As my biggest inspiration, how did you get through it?
Katharine - Aw thanks! :) My family were incredible: they were so caring, looked after me so well and reassured me that it would get better. They helped me to pace myself extremely carefully and to be strict in my routine of sleep, “proper” rest and small activities. It took a long time but I slowly improved.
  •  Me - What have you learnt about M.E. in the past 7 years?
Katharine - I have learnt that it is a truly horrific illness that I would not wish on anyone. I’ve learnt that it can push you to the furthest limits of human suffering. Sadly, I’ve also learnt about the stigma that so unfairly surrounds this illness, and that awareness is so needed for us to finally have the proper, biomedical treatment that we so deserve.

  •  Me - Are there any tips you can give that will help your health improve?
Katharine - Unfortunately we don’t have any treatment for M.E., which is a travesty. But for me, pacing and making sure I have regular *proper* rest breaks (no light or any stimulation) have been the only thing that has helped. I also take very high doses of Co-enzyme Q10 and NADH in the hope that they might convince my cells to work better!

  •  Me - You’re at uni now, how have you coped and any advice for Spoonies wanting to continue their education?
Katharine - Uni is incredibly difficult with a complex, chronic illness (albeit far easier than living with severe M.E!) I study part-time, which has helped to ease the workload and make it possible for me to study, and I pace myself incredibly carefully, often using pacing charts. I think it’s also important to have strong support around you, whether that’s from family, friends, university support networks or council-funded carers. I’ve written a post on University and M.E., if it will help anyone!

  • Me - Are there any must-have aids that everyone should have?
Katharine - Wheelchairs are obviously essential for the severely affected (when they’re well enough to sit upright and endure the stimulation, of course!) A shower stool is a must have to avoid fainting (of course for those able to have a shower). It’s not necessarily an aid as such, but I also keep one of the M.E. Association’s alert cards on me to help those around me if I was to faint or have a seizure when out of the house.
  • Me - What does the online M.E. community mean to you?
Katharine - The online community is fantastic. It’s amazing to be able to talk openly with those who really understand and to support one another. I love it.

  • Me - Why should people donate to my JustGiving page and why is it so important to raise awareness of this horrid illness?
Katharine - Fundraising and awareness are so, so incredibly important in order to change misguided opinions on the illness and to finally get us that treatment we so hope for. It really is a matter of life and death for some. The situation surrounding M.E. is nothing short of a scandal and to have so many people unable to leave their beds and needing 24 hour care yet without any medical help or support is appalling. We desperately need more awareness so that everyone can know the truth about this horrific illness. MS was relatively recently still called “hysterical paralysis”, cancer was once thought to be caused by repressed anger, Crohn’s disease and Ulcerative Colitis were still thought to be psychosomatic barely 50 years ago, epilepsy was thought to be the result of satanic possession and, unbelievably, medicine even believed morning sickness to be the mother’s “repressed rejection of her unborn baby” right up until the 1960s! The truth will out one day, and in order for this to be as soon as possible everyone should donate to the Just Giving page.

  •  Me - What’s your favourite food for the really rough days?
Katharine - Now that it no longer triggers my seizures thanks to some good tablets: chocolate! And for nausea-filled payback days, crackers and dry biscuits.

  • Me - Is there anything you’ve binge watched over and over again?
Katharine - I have so many films I’ve binge watched! The ones I’ve watched for years and years are all the Harry Potter films, Moulin Rouge, Mamma Mia, and The Hours.

  • Me - Do you have a favourite book that you think everyone should read?
Katharine - My favourite ever book is Mrs Dalloway by Virginia Woolf. It’s not to everyone’s taste, but it was the first book I read when I well enough to. It holds huge sentimental value and it is written so beautifully. 

  •  Me - What are your favourite blogs to read?
Katharine - Alongside this brilliant blog I also like to read the blogs This Open Book by Rachel, M.E. Myself and I by Anna, Faye's blog Freckles & All, Emma's blog Emma Drusilla and lots more!

  • Me -Tell  me about your pup?
Katharine - I have a dog called Pippin and he is just the best. I love him to bits – he’s so kind and caring and he was so lovely when I was really poorly that my Dad calls him Dr Pippin!

  • Me - Do you have anything that just makes you feel good?
Katharine - When I’m able to, I love to read. It is such a good escape and I love diving into other worlds and widening my experiences through literature.

  • Me - If you won a million pounds, what would you do with it?
Katharine - I would 100% definitely donate it to fund M.E. research. There is nothing more I want in life than for my friends and myself to be well again.

  • Me - Finally, do you have a quote that means a lot to you?
Katharine - “You cannot find peace by avoiding life” (The Hours) – and everything said by Dumbledore in Harry Potter!

We hope you enjoyed reading this interview and it gave you a better insight into the life of someone with a chronic illness. Again, if you want to delve deeper, then head over to Katharine's blog Katharine and M.E.

2 comments:

  1. Thank you for taking part in this interview Katharine, and Laura for all of your hard work. "The truth will out" was my favourite part - it's nice to hear other people say it, because I do believe it deep down, but sometimes it seems very far off! Thank you for providing all of us severe sufferers with a bit of hope (I think that I would put myself in that category at the moment). Laura I've just looked in your side bar, and you've done 13 posts this month, more than on target! You are killing it! Xxx

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  2. Absolutely brilliant post ladies! So good to see you coming together and raising awareness. The online ME community is such a special thing and I feel incredibly lucky to have 'met' you both through it xxx

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