The next few blog posts are going to be solely about other people living with chronic conditions or chronic pain. I recently set out to reach out to people through my Instagram (@secretlifeofananxiousmum) to find people who are, like myself, also living with a chronic condition or chronic pain in the hopes that they would be ok to share their story on my blog. I feel very passionately about this “project” because I truly believe it will help others who read this. It’ll help other people living with a chronic condition/pain by showing them and reassuring them that they are certainly not alone in their suffering, other people out there all over the world are also living with a chronic condition. It’ll also help those people out there who aren’t suffering with a chronic condition or chronic pain because it’ll help to educate them a bit more on the subject so that if they ever need to they can help people living with a chronic condition or pain. 😊
I’m sorry it’s taken so long to start posting these amazing stories onto my blog. I’ve had a hectic few weeks, mentally, emotionally and physically! If you follow my blog or my Instagram you’ll already know that I suffer with depression, anxiety and I live with severe chronic back pain which I have to take prescribed painkillers for on a daily basis. (I talk about this a lot on my Instagram and a blog post explaining my chronic pain will be posted soon)
Sometimes I will go through phases (usually a few weeks at a time) where my back pain will get really bad and my mental health will take a tumble and I just need a few weeks to recover and get myself back on track 😊 if you suffer with depression you’ll completely relate to me on this one – it becomes too damn tricky to concentrate on anything long enough. I haven’t had the mindset whatsoever over the last few weeks to properly sit down and write on my blog, the concentration went out the window and unfortunately that’s a big symptom of depression and a very common one too! I’m feeling a little better now, still not 100% but I’m definitely on my way there, so I decided to kick myself up the butt and get posting this amazing story from a fellow chronic-condition-sufferer.
These next few blog posts I would like to completely dedicate to the heroes who wrote them and shared their stories with me. None of this is my doing, none of this is me, it’s all completely them. If it wasn’t for these amazing people, I wouldn’t have a blog post in the first place. This is all down to the bravery of these people and these people only who share their story hoping to help, reassure, support & educate others.
My first story is written by a woman named Hannah. (Instagram: @reframingbirth) Here is her story:
Exhausted. In agony. Can’t think straight. Constantly anxious. No sleep. Too much sleep. Can’t move. Don’t want to move. That is where it all started. For as long as I could remember, this was the life I was living. I must have been around 10 years old when I first realised I felt awful. Cue back and forth to the doctors, being told I was just growing and had anxiety. Referral to CAMHS who told me it wasn’t anxiety and back to the drawing board. This must have gone on for 4 years. Shit got real when I was going to the doctors atleast once a week, to try to get some help. The pain was making me bed-bound, I’d sleep for over 12 hours at night and nap during the day, barely doing anything at all and skipping school constantly due to how awful I felt. My first glimmer of hope was upon meeting a nurse practitioner, who did a lot of tests and told me I had very low vitamin D levels. Okay great, I had a course of supplements and that went up to a normal level. Did I feel better? NO. So I went back. She then mentioned the f word. I’d been suspecting it for a while, I’d researched it and it sounded right. She then told me she had it too. Fibromyalgia. The illness with no cure, little medical research and barely any clinical guidelines. Great. So then I waited. Enduring this pain, fatigue, brain fog, digestive issues, anxiety. 31st March, 2015. The day I was diagnosed. Aged 17. 7 years since it all began. It was a no brainer for the rheumatologist. I hit all of the tender points, had all the symptoms and arthritis was ruled out by a blood test. So we had the name. What the hell do I do now? They referred me to the pain clinic, who told me I was too young for this and discharged me. I was told to take co-codamol, but only the strength you can buy over the counter, which I’d been having religiously anyway. I went gluten and dairy free, which did help, I’ll give it that. But I was still in agony, trying to do my A Levels. Barely attending sixth form, thank goodness for supportive tutors. My parents didn’t know what to do. My friends didn’t get it. No one got IT. So, back to the nurse practitioner. She decided to send me for a pelvic ultrasound to rule out anything that could be causing issues there. Surprise surprise, all clear. Back to the drawing board. This backwards and forwards with different tests, scans and no support went on for another year. Until one day. April 2016. I was still at college and I had a place to study midwifery, starting in the September. I was sitting there in a lesson and my whole body just went numb. I couldn’t move. My pupils were dilated, my heart rate was through the roof. Straight to hospital and that is where I stayed. They ruled out MS, did loads more tests and concluded..migraine. These episodes happened frequently and I have had 4 further hospital admissions due to them since. September 2016. I started uni. How? Living off the strongest codeine, tramadol and a cocktail of various other things. To be honest, things were ok at this point. I mean, the pain was still there and I was tired as hell, but I had a goal. I didn’t want to give it up, so I just carried on. Faking the smile, wanting to cry. Time went by and I was still trying to find answers, but it all came back to ‘you have fibromyalgia – deal with it.’ By the end of the year, my heart was causing me some issues. Symptoms such as palpitations, dizziness, nausea, fainting. It kept happening. I found an amazing doctor. He was willing to try anything. We started trialling drugs. Gabapentin, amitriptyline, naproxen, pregabalin. Unfortunately, none of them worked very well, but he believed there was something happening. He got me. We did more blood tests and my liver function was not good. I’m guessing due to all the painkillers, but he wanted to investigate that too. Then stuff messed up with the doctors surgery and he left. My one chance, I felt shattered. Wanted to give up and entered a state of depression. I almost left uni,but needed that drive to get through. We’ll fast forward again to January 2018. This is all still going on. The pain is severe, but my worst symptoms now are with my heart and digestive system. I had 3 more hospital admissions. They were questioning everything. They were taking me seriously. I saw a gastroenterologist who did an endoscopy and colonoscopy. I saw a cardiologist, had an echo, heart monitor for a week and we finally found some ‘proper’ problems. Firstly, my stomach is severely inflamed. Possible crohns. Waiting for biopsy results to confirm, but for now, medicated to try to reduce it. Secondly, my heart. Supraventricular tachycardia. It goes too fast for no reason, which is the cause of the episodes of numbness, fainting etc, previously classed as ‘migraine’. The echo also queried a hole in my heart which should have closed when I was a baby, so I’ll be going to a specialist unit next month to have a cardiac MRI. For now, bisoprolol is my friend. The cardiologist said he would never prescribe this for someone my age, but my heart is ‘out of control’. It is nice to see someone who understands. Me, I’m ok. The drugs are kind of working. I don’t want to be on them, but they let me get out of bed in the morning. I think it is a mindset thing too, I have worked hard with mindfulness and reducing anxiety. I’m still studying and will qualify as a midwife in September 2019. I’m running my own business, teaching hypnobirthing to expectant mothers. I am holding down this job, I have never been able to work before. Don’t get me wrong, it is hard work, doing all of this. But I just can’t sit here doing nothing, in self pity that I’ll never be normal. I know my limits. People around me know my limits and I do what I can. I work from home. I sleep when I want. I work short shifts and no nights. I do what I can and I am happy for the first time in 10 years. I know I still have a long way to go and there will be many bumps in the road, but for the moment, I am able to function and I couldn’t be more grateful. I realise that so many people with fibromyalgia are completely debilitated with no quality of life and trust me, I have been in that place and expect to be at any time, but there is definitely hope.
A huge thank you to Hannah for sharing her story on my blog in the hopes to help others suffering with chronic conditions. ❤️