I’ve had the chance to ask the inspiring lady behind the blog and youtube channel ‘Fizzstah’ a number of questions about her journey dealing with her medical condition Mixed connective tissue disorder. Jay is a Motivating individual that has created n online community via her social platforms where she helps to educate and bring awareness about her condition as well as sharing her travelling experiences. If you want to hear more about Jay and how she manages MCTD keep reading.
Tell me a bit about yourself
My name is Jay aka Fizzstah on social media. I am 26 years old. I enjoy taking photos, I am a social media junkie and I love travelling. I was diagnosed with Mixed Connective Tissue disease and polymyositis two years ago. After taking a month off of work during the diagnosis process I returned to work full-time after 3 months phased return. If you’re unsure what a phased return is it’s basically when you work part-time until start doing your full hours again. So I did two days a week, then two and a half and so on until I was back up to 5 days.
What is mixed connective tissue disease (MCTD)?
Mixed Connective Tissue Disease is an autoimmune disease where the body mistakenly attacks healthy tissues. It is a chronic / long-term illness with no cure.
MCTD is often referred to as an overlap condition although it does have its own specific diagnostic criteria. A person will experience symptoms of other connective tissue disorders. These include Lupus, Sjogren’s syndrome, Scleroderma, Rheumatoid Arthritis, Polymyositis and Dermatomyositis. Mixed Connective Tissue Disease as the name suggests affects your bodies’ connective tissue so just about every part of your body is at risk of damage from an overactive immune system.
What symptoms may someone with MCTD experience?
Personally, my main symptoms are joint pain /swelling, muscle weakness and fatigue, although the muscle weakness is more part of my Polymyositis diagnosis. I also have to deal with Raynaud’s syndrome where my fingers and toes are extremely sensitive to cold temperatures. They get cold very easily then go numb and this can be very painful.
Other symptoms of MCTD can include all those associated with Lupus, Sjogren’s Syndrome, Scleroderma, Rheumatoid Arthritis, Polymyositis and Dermatomyositis. So this may be dry eyes, skin rashes, tightening of the skin and damage to major organs due to inflammation.
When were you diagnosed and what lead to your diagnosis?
I was diagnosed in 2015 after being referred to the rheumatology department by my GP. I was suffering muscle weakness for a long time but I had assumed it was due to my sedentary lifestyle but I then I started to experience pain, swelling and stiffness in my hands which were misdiagnosed as tendonitis (a form of repetitive strain injury) and was attributed to my job.
The turning point came after I returned from a three week holiday and my fatigue and joint pain were severe. Since I had been on holiday it could not possibly be related to my job. When I returned I attended an appointment with my GP who referred to the rheumatology clinic. Although it did take three months for me to get an appointment.
How did you feel when u received the news?
In all honesty, I didn’t take it in at first. The first rheumatologist I saw wasn’t very helpful. He asked me what symptoms I experienced which I explained, then he confirmed that between my symptoms and blood tests results I definitely had a connective tissue disease. He then gave me a leaflet and told me to get an eye test so I could start on some medication. At this point, I didn’t understand the severity of the condition or how it would impact my everyday life – I was just happy to have my problems clinically recognised and had hope that I would start to feel better.
How do you treat your condition?
My condition is treated mainly by medication but I have also made some lifestyle changes. Currently, I take 5mg of Prednisolone (steroids), 150mg of Azathioprine (low dose chemotherapy) and a whole host of vitamins and supplements daily.
Besides taking medication what other changes have you had to make?
I have to make a conscious effort to rest a lot because if I try to do too much my condition ends up flaring, so a lot of time is spent at home or in bed. I used to just take cod liver oil, evening primrose oil and multivitamin supplements when I could remember but now I take a variety of supplements that are supposed to help in various ways.
Prior to being diagnosed I didn’t have much energy for anything so I definitely wasn’t exercising, but now I do try to be more active although it is difficult when suffering from joint and muscle pain. I also try to eat more healthily but this can be difficult when I don’t have the energy to cook. Overall it’s just a big balancing act of doing things when I’m able and not beating myself up when I can’t.
How has having MCTD affected your social life/relationships?
Well, I avoid going out during flu season so I don’t socialise much through autumn and winter. Since I am immunosuppressant catching colds can be pretty dangerous, in the first year of being diagnosed I visited A&E at least 3 times just due to colds.
My good friends are understanding but before I was diagnosed I did lose friendships because i had to turn down invitations due to being tired all the time. Luckily for me, my boyfriend has been very supportive of me and either he or my mum accompanies me to all my appointments.
How do you stay positive?
Staying positive can be very difficult at times. Overall I am very pragmatic and just accept this is my life and I have to get on with it, but there are times when I break down and cry. Knowing you have to deal with these conditions for the rest of you life and coping with daily pain can be overwhelming.
I try to continue to do things that I enjoy like travelling, socialising when I can and listening to music. My family and friends definitely help me a lot in staying positive.
What inspired you to start both your blog and YouTube channel?
I started my first Youtube channel Fizzstah TV, before I was diagnosed. This was because I was obsessed with Youtube and thought why not get in on the action. I also made a blog to accompany this. As soon as I was diagnosed I was searching the internet for people’s real-life experiences living with my conditions and I struggled to find anything. That’s when I made the decision to start a second channel which is now more like my main channel documenting my illness and creating a resource for others looking for information on MCTD. I also incorporated my life with chronic illness into my blog and have recently started a new segment “Chronic Wednesdays” so I have a scheduled time weekly to share my advice and experiences on my blog.
What advice can you give someone that has MCTD?
Take it one day at a time and try to remain positive.
Feel free to check her social platforms & Show some Love
Youtube: FizzstahTv http://www.youtube.coom/fizzstah & Just Fizzstah http://www.youtube.com/fizzstah2