The Chronic Diaries: Lauren’s Journey with Chronic Conditions

Where are you based?

I’m originally from Luton but I’m at uni in Brighton, England.

What chronic condition(s) do you have? Please briefly describe what they are?

Well… I was diagnosed with ME/ CFS but I’ve just been undiagnosed of Myalgic Encephamyeloitis after having this diagnosis for 4 years! I was set on it just being ME so now I’m confused! I’ve got Tourettes Syndrome, Hypermobility Syndrome, IBS (irritable bowel syndrome) Fibromyalgia with hypersomnia, Hyperthyroidism, Coccydynia and I am deficient in a variety of vitamins. The process is a long one so some conditions are undiagnosed or being investigated- doctors are currently exploring POTS (Postural Orthostatic Tachycardia Syndrome), EDS (Ehlers Danlos Syndrome) and PANDAS (Pediatric autoimmune neuropsychiatric disorder associated with streptococcus), as well as potential autoimmune conditions.

What symptoms did you deal with before you were diagnosed?

Joint pain, fatigue, coccyx pain, stiffness, fainting, swelling, diarrhoea, long bouts of hypersomnia (15-28-hour naps weren’t uncommon- most days a nap would be this long, depression, rapid weight gain, constant laryngitis, dizziness, wide-spread pain.

How were you diagnosed? What was your journey to diagnosis?

I was told the average time for an accurate diagnosis is between 7-9 years, for me my diagnostic journey has been particularly complex as I moved to Brighton for university just after investigations with my rheumatologist. He then went on sick leave, said ‘he thinks I have ME, fibro, HSD and hypersomnia’ but I was never given the formal diagnosis’ by a specialist, just my GP. I then encountered a lot of frustration as referrals were constantly being ‘lost’ (AKA not done) in Brighton which means after two and a half years living in Brighton I had just been seen by some specialists and on the list for others, then of course we landed ourselves with  COVID-19 and I was back to square 1 waiting for appointments. I have seen many doctors and had hundreds of vials of blood taken, and multiple scans. I’ll find myself two steps closer to getting the correct diagnosis then end up taking three steps back1 again. The diagnostic process is a stressful one which takes a very long time. Much of my life (and my mum’s) have been dedicated to chasing referrals over the past few years!

Did this journey have an impact on your daily life? Eg, dropping out of college, quitting your job/getting fired? Etc

Yes massively! I had to stop working as a waitress after breaking my coccyx due to constant pain in my hips, legs, and knees. My body generally just slowed down a fair amount which caused me to be unable to work as I couldn’t keep up with the fast pace of working. I went from averaging 25-30,000 steps a day doing back to back 12 hour shifts to struggling to walk or sit for longer than a few minutes. I now always struggle standing or sitting for long periods of time which means office jobs aren’t really practical to me and neither are physical jobs. I had to intermit my degree last year due to my intense symptoms worsening and having to constantly attend hospital appointments which would use up all my excess energy which was meant to be left for studying. I spent hours and hours asleep and didn’t have enough support set in stone to help regiment my 26 hour long ‘naps’. I didn’t receive the grades I deserved in school or sixth form due to my panic disorder and the fatigue in particular. I went from being a straight A student to someone who struggled to read a few lines without falling asleep. Migraines stop me working on my laptop and reading and I guess the journey to good treatment having been such a long process definitely doesn’t help my ability to focus or concentrate. I tell people I am my own admin assistant and it’s true! I often overslept lectures, hand in dates for assignments and was definitely not well enough to attend a job!

Are you on any medications?

Yep annoyingly I have to take a fair few, I take my thyroxine medication every day and a whole host of other meds including vitamins however I’m on a lot less medication than I have been on in the past particularly for my mental health which is a massive positive!

What side effects do you encounter, if any?

Some of my medication has made me hallucinate in the past- this is really scary and hard to deal with, I always have a little niggle in the back of my mind now that this is going to happen again and the thought is petrifying, I guess this has made me quite strategic with the medications I do choose to continue taking. Unfortunately, with lots of my medication I don’t really have my choice in whether I take it- it’s either I take them or find myself seriously poorly! Other meds have made me slur my speech and be a bit floppy. The most common side effects I experience are definitely excess fatigue and brain fog-feeling a bit blurry brained. I’ve also had some meds damage my insides although temporarily, it can be a bit worrying. Acid reflux too. For me it’s hard to know what is a side effect and what’s another new symptom. Doctors are quick to blame every symptom on fibromyalgia, when in reality I feel this condition actually affects me directly least.

What symptoms of your illness do you deal with on a daily basis (even when on medications)? How do you deal with these?

Brain fog- Just making others aware that I may need extra time or sometimes I appear like I’m not really listening or the fact I’m pretty forgetful.

Swelling – alternating ice and heat.

Fainting – I can usually tell when I’m about to faint so I put myself onto the floor and raise my legs above my head if I’ve caught it early enough, I’ve also increased my salt intake.

Dizziness – similar to fainting, my blood pressure is low so I’m learning to slow down with each movement.

Fatigue – pacing, doing little and often, to be honest I really struggle with fatigue management- admitting you need rest and knowing it is okay to rest helps me! With hypersomnia, having someone around to wake me up at regular intervals for food, drink and medication as well as simply just to get me out of bed to stretch my legs is useful.

Chronic pain – finding a good medication that works for you in a flare up. For me my heated blanket is an absolute dream and really helps painful flares.

Migraines – the only one that helps me with this is taking Rizatriptan as it’s a fast-acting migraine tablet, I also wear my ear defenders and sunglasses to keep out unwanted noise and light.

Joint aches – anti-inflammatory gels, massaging the area, elevating the area.

Rashes- we aren’t really sure what I’m actually allergic to but I always have antihistamine on me as I tend to get lots of rashes.

What occupation do you have? How does your illness effect your job/employment?

I’m a student studying English Language and Linguistics and I don’t work due to my illness.

How does your illness impact you mentally?

I feel a bit ‘unnormal’ compared to my peers. I hate having to ask people to do simple tasks for me. It effects my self-esteem massively when I’m unable to do something I ‘should’ be able to do. I find it hard asking for help if I feel I should be able to do something that my able-bodied counterpart is able to do easily. I guess I’m pretty hard on myself and when I feel low, I get really low but 90% of the time I’m pretty positive and motivated to feel better- you’ve got to be, it’s one of the only things you can control. I get upset sometimes with my appearance or the whole ‘woe is me’ feeling sorry for myself but that’s okay- we all get like that! My mental health has improved drastically from where it was when my OCD and panic disorder and depressive disorder were at their peak. If you knew me then VS now, you’d probably be very surprised at how different things are.

How do you keep motivated dealing with your chronic condition in your daily life?

If you don’t laugh, you’ll probably cry. This is so true for me. I make my situation funny; we laugh at my tics or if I fall over on nothing as it’s funny (most of the time!) Looking at how far I’ve come mentally helps and being able to accept that if my circumstances are like this forever, I want to still live a fulfilling life. I have aims for every day, even if somedays it’s just to have a shower. Having big aspirations and goals keeps me going. The support of my friends and family helps me immensely. I’ve lost a few friends through the process of being chronically ill, but the ones that have stuck by me are amazing. They’ll be here for a long time. My friends and family support me in everything I do and I like to think I support them as much as I can too. (I hate the idea of relying on others so I always try my best to offer things back whether it’s a lift in the car or a ear to listen to them rant.)

Is there any advice you would like to give to people who are on their chronic illness journey?

Hang on in there. I feel your frustrations. Keep on smiling although it could always be better it could also always be worse, feel what you need to feel. Always ask for or admit you need help. Ignore ‘those’ people in life. Have an aim every day. Advocate and Educate.

How do you encounter people having your illness? Do people understand? Are they ignorant? What level of difficulty do you have with this, if at all?

Watching peoples’ reaction to my Tourettes brings me great entertainment. People are very ignorant. I spend much of my life advocating for those who may not be able to advocate for themselves. The general public are frustrating, often rude or nosey. They have two extremes. They can be super, super helpful or they can be incredibly unhelpful. Oh, there’s so much I could say on this really!!

Is there anything you want to say to these people? Or the general public who do not have a chronic illness?

I wasn’t born in a wheelchair or with Tourettes. Be cautious of how you treat people as you really never know when it could be you or someone close to you. Try and educate yourself on accessibility needs. Listen to others and don’t assume. Think about us when planning. Try to be accommodating to others needs. The word doesn’t revolve around just you. Listen to those who are trying to educate. If something is easy for you doesn’t mean it is easy for someone else. It’s the little things we appreciate. Just because I’m using a mobility aid doesn’t mean I am unable to understand you or advocate for myself- speak to me not about me or over me

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