You And Your Condition
Tell us a bit about yourself and interests!
I am 23 and live in Leeds. I love going on long walks, looking after others and regularly feed the homeless in Leeds city centre.
What is your diagnosis/condition(s) and what was the process of it?
I have a form of Inflammatory Bowel Disease known as Ulcerative Colitis. I have a rare condition called vasculitis where the blood vessels anywhere in my body can swell and inflame, either breaking the surface of my skin or causing long term organ damage. I have another rare autoimmune disease of the liver, which causes the bile ducts to become blocked, and causing scarring of the liver.
I was first admitted to hospital with a temperature of 38 degrees and severe tonsillitis. My right hand then swelled up and bloods were taken. I was referred to a rheumatologist who did not know what I was suffering with. I was then admitted to hospital another three times, more bloods, four skin biopsies, tests for lyme diseases, rare diseases, under the care of five different consultants and I received the diagnosis of vasculitis in July 2017. Whilst diagnosing my vasculitis they found high inflammation levels in a stool sample. I was referred for an urgent colonoscopy in August and I was diagnosed with IBD (Inflammatory Bowel Disease). I had blood tests everyday and my liver function was abnormal so I also had an MRI of my liver where they saw the scarring and I was diagnosed with PSC. I was then admitted every month between July 2017 and May 2018 when my stoma was formed.
How long did the diagnosis take and at what age did you receive it?
I first fell poorly in January 2017, I believed it to be an allergic reaction so I had a major lifestyle change in hope it would help. However, now I realize that I was suffering long before my symptoms became physical. When I was younger I would sleep all the time, have little appetite and generally feel unwell. I was diagnosed with everything come the September of that year. It was just before my 22nd birthday.
What were your initial feelings following diagnosis?
I had suffered for so long that I knew something was wrong with me. I had already come to terms with whatever it could have been before it was given a name. I often cried whilst poorly because I thought I was dying and nobody could tell me why. I knew I was poorly so it was only a label.
What are/were the symptoms of your condition(s) and to what extent do they affect your everyday life?
· Extreme Fatigue
· Brain fog
· Hair loss
· Nose Bleeds
· Loss of hearing, loss of taste, loss of smell
· Swollen, stiff joints
· A red, swelled rash covering my legs to my arms.
· A general unwell feeling
· Up to 30 toilet trips a day
· A lack of ability to control bowel habits
· Fast heart rate (once had a resting heart rate of 156 beats per minute)
Is there a cause for your condition(s) or is it currently unknown?
There is currently no known cause, however autoimmune diseases are thought to be a mixture of genetics and environmental triggers.
Have you had to undergo any difficult procedures or surgery and has it helped?
I have had multiple colonoscopies (camera up my bum) and I have had cameras down my throat. I have had countless blood tests, four skin biopsies and a fair few MRIs/CT Scans. I have also have had a heart monitor on due to the frequent chest pains and fast heart rate. In May 2018 I had my large bowel removed. I was admitted to hospital and my consultant said that I would die in a few months if I didn’t. I now have a stoma bag. I remember waking up from my surgery and hearing the surgeons and nurses discuss how knackered my insides were. It was only meant to take a few hours but I was in surgery for nine.
Life With Your Condition
Are you on medication for your condition(s) and do you get any side effects with it? How do they affect your life if so?
I have been on multiple medications causing severe nausea, mood swings and hair loss to name a few side effects. I have also been on steroids which cause dreaded weight gain and moon face! However, I am now on no medication.
Are there any known triggers that set off a flare or make your condition(s) worse?
Anything! Alcohol, exercise, stress, walking etc. When I was at my worse I couldn’t even sit without my feet swelling and being in extreme agony.
Would you say you have a good support network and a designated person/team to help you with your condition(s)?
My consultants are amazing. They work together so well, often emailing one another to discuss different aspects of my conditions and my symptoms. I think because I suffer with such rare diseases they have never really had a patient like me before. I know my rheumatologist has done a lot of research into my conditions and many members of staff at the hospital recognize my face and my name. I also have an incredible boyfriend. He has made me laugh instead of cry and he has overcome his fear of hospitals by visiting me so often.
How would you say your condition(s) has affected the relationships in your life?
It hasn’t, at all. I have always ensured that those I surrounded myself with were positive for me so already had a great circle of friends.
Would you say it has affected your goals in life? If yes, in what way?
To some extent, yes. It will take me a little longer to reach my career goal however whilst I was getting diagnosed with my chronic illnesses and through all the hospital admissions I managed to complete my Forensic Psychology Degree and work part time for a charity that supports disadvantaged people. I had to hold back on my doctorate application but I have now sent it off so fingers crossed.
Would you say it has negatively affected your mental health? If yes, how has your experience been with that?
There are some days where I find I struggle with myself, how life has turned out for me. I realize though that I am extremely resilient and I have great internal strength. I have such an appreciation for life and love waking up every morning knowing I am alive. I think because not only have I dealt with my own struggles but from 2016-2018 I lost three people I loved so dearly and I have also supported others in my family who were dealing with their own battles.
What lifestyle changes have you and people around you had to make to accommodate your condition(s)?
I have had to cancel my gym membership but really I have not had to change anything. I do everything as normal and sometimes wear slippers to work or to the shops to help ease the swelling but that’s about it.
Last But Not Least
What are the main things you’ve learned through having your chronic condition(s)?
Life is too short, too many take it for granted and too many settle for less than they deserve. Always fight for what you want and you’ve got to work hard to achieve in life. Don’t expect anything good to happen if you sit and watch the world go by.
Do you have any advice for newly diagnosed people with your condition(s) or a long-term illness?
If you don’t think you are receiving the best care then change. It’s very easy to Google different consultants and asks your GP to refer you to them. Lastly, it’s not the end of the world! You are alive, you have a roof over your head and you can cook dinner. Continue fighting and continue being you. Life always turns out all right as long as you make it all right. Stay positive and laugh about all you go through.
Lydia hasn’t requested any social media platforms to be displayed but would love if you’d be able to like/follow and if you’re able, to buy some lovely handmade bits from Heart String – Carols Crafts. Upon selling items, some of the profits are donated to Crohns and Colitis UK and Vasculitis UK!
Thank you so much to Lydia for taking the time out to share her story and information on the rare diseases she has. If you’d like to read another part of the series, you can check out the last instalment here! Or if you’d like to share your story and take part in the Chronic Confessions series, pop me an email on firstname.lastname@example.org and I can send you over the questions.
’Til Next Time,