Shining The Spotlight On Chronic Illness & Disability Q&A with Anonymous
December 16, 2018
Hello and welcome to another instalment of my Shining The Spotlight series. Today’s Q&A is with one of my friends who wishes to remain anonymous. This is her story.
Introduce yourself and tell us a bit about you?
I am a 35 year old female homemaker with a ten year old, loving partner and dogs.
Chronic illness(es)/disabilities I have?
I have Crohns disease which at first doctors thought was coeliac disease. I have problems with joints swelling which they think is rheumatoid arthritis. I also have anxiety issues.
My symptoms/condition began?
I was ill after a holiday to Majorca in 2004. I had really bad food poisoning and never got better. Running to the toilet, losing weight, constant stomach pain. After tests they said I had coeliac disease. Which believe it or not was fine with me. I enjoyed the food and was positive because I was right, something was wrong with me. Unfortunately I didn’t get better and Doctors suspected I was just cheating on the diet and told to do better. I had to defer my uni place a couple of times. Each time this broke my heart. I felt like a complete failure. I remember the day my father and step mother found me skin and bones wasting away on the sofa. I could hardly get up to make them a cuppa. That’s when they said they would like me to see a private gastroenterologist in Glasgow. There I met an amazing consultant who after my first paid visit put me on his NHS hospital books where I got endoscopies, colonoscopies, capsule endoscopies and told I had Crohns disease. I jumped with joy and wanted to go back to the hospital in Falkirk Falkirk and say ‘SEE TOLD YOU SOMETHING WAS WRONG!!’ But I was foolish because this was not a fun disease and not something anyone would want. I was put on steroids and they made me sooooo much better. I could eat and put on weight and got a very round moon face (not a good look). I was introduced to an IBD specialist nurse and my life became working round hospital visits because you can’t stay on steroids, the dosage reduces whilst you have other medication that you stay on. Long story short, my body rejected all of them, so they would up my steroid dose again. I got my degree and had a part-time job. My boss let me work near a loo if needed, which was lovely of her. I started my honors year but Crohns flares made it difficult. I’d pray every time I wouldn’t need the loo on the train and worry it would be delayed. One exhausted day on the way home on the train I had so many toilet visits that day I just sobbed all the way home. I had had enough, I had no fight left in me. So I quit, I could have deferred again but I was so low and defeated. The tutors, to be frank were shit (pun intended), and the least supportive bunch of people I had ever met in my life. However I was leaving the nicest bunch of friends. They were amazing kind-hearted people, I still miss. For the first time I thought who the hell would employ me, what was the point? I still feel that way today.
After having my daughter at 25 I became the sickest I have ever been in my life, both mentally and physically. I had hyperemesis gravidarum during pregnancy which means I puked the whole nine months but my Crohns disease stayed away and I was not on medication. Then, pretty much the day after giving birth, my body and mind panicked. I was going to the toilet endlessly, breast feeding night and day and very adamant I was going to breast feed for six months. This meant I had to be home to be close to a toilet and I became terrified to leave the house. When I did get my next colonoscopy they talked about surgery and this scared me to death. I was again put on steroids which this time made me ill. I tried other medications but nothing worked. When I went to start back at my old job my top boss was made redundant which meant my other boss was in charge and she came to my house to tell me no more shifts near a toilet if I was coming back and I would not be allowed to leave the shop floor. The toilet was down a flight of stairs! I couldn’t do it, how could I? Try telling someone with Crohns disease they can only use the toilet at breaks. Another thing I gave up – again leaving more good friends. This just reaffirmed to me that no-one would employ me as I am and I’ll always will be unreliable – something I add I never used to be before this disease.
I spoke to someone regarding my anxiety which did help me go out on good days. I would only do this if I hadn’t eaten something. The underlying issue was my Crohn’s stopping me. I think the talk of surgery and the thought of how am I going to get my daughter to school every day, made me take drastic changes.
I read two books. The first was called ‘The Linden Method’ by Charles Linden which changed my head and ‘Breaking The Vicious Cycle’ by Elaine Gottschall which talks about a diet called the Specific Carbohydrate Diet or SCD which changed my Crohns for the better! I rejected it initially because it was meat-based and I had been a vegetarian since I was ten so this was massive for me and required me to dig deep and just do it. This diet has changed my life. ‘Die off’ (where you kind of detox from all the crap you eat) was a bitch but it was just for the first few days! Since doing the diet I am now able to go out and do things. I like having my partner and the car with me. I always like an escape route, but I’ve learned that that’s ok if it gets you out and about. I even spent two nights in a hotel in Edinburgh with just my child, which was massive for me.
I can also now deal with panic attacks thanks to the ‘Linden Method’. Beforehand, I would not do something in fear of having a panic attack or need to rush to the loo. Linden tells you that you are writing a story that hasn’t been written, in your own head. Distraction is everything, I have to stop my brain from ever getting to the point of fear or worry. I find loud music and podcasts with my ear phones help drown out negative thoughts, cooking, cleaning even calling someone or playing app games. You have to stop the voices in your head. It’s a battle, I’m not going to lie, but you have to keep telling yourself deal with it when it happens not if it happens!
My diagnosis process was?
One word LONG! I wish I was rich – private health care seems so appealing when you have a life-long condition. It is mad, but I am currently not taking any Crohns medication and now see my consultant once a year. I often ask myself why hasn’t he rushed to my door and asked me to talk to other patients about the SCD diet. One word- MONEY! The doctors can’t research something that won’t make someone a profit as there’s no pharmaceutical companies involved in this. It’s sad that diet and Crohns is not of any interest to the medical profession.
The hardest part of living with my illness/disabilities is?
I have missed so many moments I will never get back like friends weddings, so many of my child’s first like getting her first pair of shoes and her first day of nursery or her being Mary in nativity. I also dropped so many friends because I was, and still am, embarrassed to say I have Crohns Disease and because of it I am not the same carefree fun person I was. I honestly would rather they remembered me exactly like that rather than how I am now. It’s stupid and sad, I know.
Secondly ‘Bowel Prep’ anyone with IBD issues feels the pain of these words!!
People assume that?
I think because I don’t work that I’m a lazy cow with the life of luxury. I am actually bored a lot of the time. I tried to get funding to do my honors year online but they knocked me back and said I would only be allowed funding if I went into a uni to do it. Something I’m not willing to do, again I’m too old.
A typical day for me involves?
I take my child to school which I am mega proud of. Crowds and toilet issues was never easy but thanks to my diet I don’t worry as much. I have to prepare every single thing I eat so I spend a lot of time making my meals in bulk. I clean the house and most days need a nap. I am running on less calories so do tire easy. I have four meals a day and I eat the same thing every single day. The diet isn’t like that I just like knowing I won’t have toilet issues and can actually eat pain free.
I pick my child up and do homework, clubs and family time. Baths soothe any achy muscles, then tv and bed. I’m a night owl so always up late.
The one thing I cannot live without is?
My child and partner. He is the reason I can stay home, he looks after me. We have never said ‘in sickness and in health’ vows which makes him even more amazing. My child gets me up in the morning and makes me smile every single day.
Being ill/disabled has taught me?
I now have such compassion for illness, all illness. Mental health is sometimes harder to understand for some people but I completely get it. I think back to people I knew who were ill or disabled and I felt sorry for them but if I am being honest I didn’t think about how they felt day to day. It didn’t affect me. I wish I was more compassionate and helpful, maybe even scarifying nights out for nights in if they needed to.
What advice would I give someone recently diagnosed?
It sucks and for a long time you are going to have to rely on friends and family and no doubt miss things that are important. But my God, fight. Fight every step to get better. Trust your judgement, it’s your body and you can tell if something isn’t right.
My support system is?
My partner of 15 years. My family were brilliant but they moved a distance away and have a life of their own, so 95% of my support is from one man.
If I had one day symptom/disability free I would?
Love this question and I would love to jump into my 19 year old body and do a shift in my old job with my friends (I miss working and being useful) and get ready in the changing room to go on a night out eating & drinking every waking moment! The freedom of being in a short skirt or dress, heels on and dancing without a care in the world having an alcohol fueled high sounds liberating. I see it in my head in slow motion.
I seriously would consider killing someone for a can of diet Irn-Bru and a packet of crisps. Or maybe Pizza Hut Nic?
I’d like to take my friends with the kids to Paris and eat a warm pain o chocolate. No partners cause we can do it on our own!
One positive of having a chronic illness/disability is?
If my daughter ever gets this disease I have been through it first. I pray the SCD Diet would work for her making this whole thing the fight.
The spoonie/disability community has been?
Celiac UK were unbelievable with the wee book of foods you could eat. It wasn’t like it is now with gluten free food options everywhere and labelling on food. Crohns and Colitis UK was something my Dad advised me to stay away from because a lot of the stories are frightening detailing worse case scenarios, pretty much horror stories. As a newbie, this stuff would make you ill and worry. But that’s a personal choice. The SCD Lifestyle website https://scdlifestyle.com/about-the-scd-diet/info helped me immensely when I first started my diet and still do with info on vitamins etc.
Thank you to my wonderful friend for taking part in this series and for sharing your journey with me and my readers. xx
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