You are not Your Illness
I have read many quotes about chronic illness and this is one that stays with me. I have always been a very determined and stubborn person. I haven’t liked relying on others in life and have always tried to get through things without being a “bother”. I never wanted to feel like I had to be “taken care of” or lose any of my independence. For as long as I can remember I have always been ill with one thing or another. Most of my childhood was spent between doctors’ waiting rooms, school and in bed or on the couch. I had tonsillitis so many times by the age of 7 that I had to have a tonsillectomy. I always remember feeling so helpless and such a worry to my mother when I was ill, and hoped that I would never get ill again. Unfortunately, that wasn’t meant to be; a lot has changed in the last 20 years for me, but being ill isn’t one of those things.
I don’t know what caused my M.E. or Fibromyalgia; all I know is that for many years I felt like something wasn’t “quite right”. I would get cold after cold that would turn into an infection. There were days when I could walk 5 miles a day with the dog and then do my usual 50 hours a week at the veterinary practice where I worked without even batting an eyelid, and then some days it just killed me to even think about getting out of bed – I felt like lead and I just wanted to cry and make the world stop for a while. There were days when I was so tired and down that I didn’t even feel real any more; I knew I was talking and moving but it didn’t seem like me. I visited my GP on many occasions about how I felt, I got blood tests galore over several years to test for anaemia, diabetes, thyroid problems etc. and they always came back clear. I was told that I probably just had a viral infection and to drink fluids and take paracetamol and, the most condescending of all, I was told I was probably “just a little bit depressed”; no one actually listened to what I was trying to say. I eventually decided to just plod on and try and do what I could when I could.
One morning in February 2013 I didn’t feel right at all. I had been telling my husband (fiancé at the time) for a few days that I was really struggling with how I was feeling and that even breathing seemed to take everything I had in me. I got up to get ready for work and went to the bathroom to brush my teeth when everything went distorted and yellow. I had had fainting spells before so I made my way to the door to call for my husband and before I even knew it I hit the ground. Forty-five minutes later I woke up in my bed with my husband on one side and our dog Vader on the other. I didn’t have a clue about what had happened; my husband told me that Vader had heard me moving, ran through to see me and found me lying on the top of the staircase out cold. He ran and got my husband out of bed and then came and sat by me until my husband came to pick me up. My husband told me I was talking to him and in and out of consciousness but I don’t remember a thing, even to this day. That’s when all the testing started: more blood work, ECGs, EEGs, CBT and trips back and forth to a GP who, while I was in the room, actually used Google to look up M.E. and Fibromyalgia. Since that day in February 2013 I haven’t ever gained anything back; I have tried pacing, gluten free, natural remedies and vitamins, prescribed medication, Cognitive Behavioral Therapy, physiotherapy and psychologists, and no one and nothing has really been able to help me. In October 2013 we moved from Kidderminster where my husband was from and where we were living at the time, and went back to Scotland, which is home for me, as my husband was struggling with looking after me and trying to keep a full-time job. He had no help from his immediate family as they didn’t really have the time for us and didn’t really understand what we were going through, although his grandparents were always asking about me and spent hours online looking up the illnesses and what research is being done. I felt like I had lost everything and I really needed to be at home with my family to regroup myself and find the strength to battle through.
I now have a wonderful GP who completely understands this illness and who has been eager to help and advise me as often as she can. She organised for me to see a neurologist, as she was surprised that I had never been sent for a MRI scan to rule out any other illnesses, such as MS. She thought it would be best to see a neurologist first and take it from there. I have to say that I have met some absolutely vile and rude human beings in my life but this man, as they say, took the biscuit! He started the consultation by telling me he “didn’t believe in Fibromyalgia or M.E.”. Funnily enough, he didn’t seem too happy when I told him that we weren’t talking about Santa Claus or the Tooth Fairy, we were talking about something very real and that it was taking over my life. For all his non-believing I was very surprised to hear from my GP that he had written a very nice report and had organised for me to have a MRI as soon as possible. (The MRI was terrifying and I tried to do the best I could but it was too much for me; small, confined spaces and hospitals don’t mix too well with me.)
I came out of the appointment with that neurologist and I cried my eyes out right in the middle of the main hospital corridor. How could someone tell me that the last several years of hell that had become my life and my husband’s life weren’t real? That’s when it hit me: I needed to do something to try and change people’s point of view. I needed to make the best of the free time that this illness had given me and raise awareness and give a true representation of this illness. This illness takes away so much from us all; it destroys your confidence, makes you feel hopeless and useless and makes you feel so very alone. I was tired of feeling like life was passing me by; I had an illness but I still had a lot of things to offer. After all, we are still human, we have hopes and dreams just like everyone; yes, we have to fight harder to achieve them, but that doesn’t mean we shouldn’t try. I came up with “Haggard Hanslow” – my own website and Facebook page – and hoped that I could start changing people’s viewpoint by giving a real representation of this illness and by blogging my own personal accounts. In my journey to start this I also applied to become an ambassador for M.E. Research UK and told them about what I was trying to achieve. It was a huge surprise when I got the letter in August 2014 telling me that they had chosen me as one of their ambassadors and that they thought that my idea was innovative and wished me well.
I have done the Walk For M.E. 2015 with my husband and dog Vader, which was a huge challenge for me, I have raised money through candle pools and raffles, and my husband gallantly did a bungee jump off Killiecrankie Bridge in Pitlochry to raise money too. I had my own first event in November 2015 and we did well despite poor turnout due to the management at the venue. It has been a difficult road trying to start raising both awareness and funds and I felt in February 2016 that I had been trying for a long time to make a difference but it was always the same people donating money: family and friends, almost a rob Peter to pay Paul situation. So I made the hard decision to step away from the Haggard Hanslow idea. I am now an ambassador for M.E Support and it is a position I take great pride in.
In January 2016 I gave birth to our first child, a boy called Macen Stuart Hanslow. Becoming parents for me and my husband was not something that we took lightly and there was a lot of discussion between ourselves and with my GP before we made the decision. It has been the greatest gift ever bestowed upon us, I have had previous miscarriages and thought that when I became ill that I wouldn’t get the chance to become a mother, so it means even more to me than most. Macen has been a step ahead with every milestone he has reached: he was crawling by the time he was 5 months old, eating solids by the time he was 7 months, walking by the time he was 11 months old and running by the time he was 13 months old. He is now 16 months old and he is a very active child and it does put added pressure on me and my husband to make sure we keep a good balance of me being the best parent and wife I can be but not burning myself out. I won’t sugar coat it, it has been a lot of trial and error, and there have been many days I’ve broken down crying for hours. The guilt of these illnesses is felt more than ever when I can’t find the stamina needed on some days; these are the days where I feel like I’m the worst mother in the world and as much as I try I feel like I keep failing, then Macen comes over to me with a big smile on his face, a book or toy in his hand and says “Love you Momma” and that is when I know I made the right decision, that despite me having chronic illnesses I can still be a kick ass parent and my son and my husband appreciate the fact that I never give up, I always try my hardest and I fight for them, for our family and for me every day. You can read more about my experience with parenthood in Pregnancy & M.E.
I found M.E. Support when I was looking for answers about this illness, and everything I had ever questioned I either found on Louise’s website or could email her and she would contact me back with any information she could give me. She was a real inspiration as she and the team at M.E. Support have done so much in the last 16 years to raise awareness and change people’s perceptions of chronic illness. I am so privileged to be a part of the team as an ambassador. I look forward to sharing my story and continuing to help raise awareness and support the best I can.
“You are not your illness.
You have an individual story to tell.
You have a name, a history, a personality.
Staying yourself is part of the battle.”