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Showing posts from 2018

Life As A POTS Patient (Postural orthostatic tachycardia syndrome)

Postural Orthostatic Tachycardia Syndrome is a controlling condition, and everyday life is quite restrictive for its patients. Especially when it comes to things like leaving the house. I can't just take myself off to browse around the shops without thinking, I have to spend some time carefully planning my route before going anywhere because I need to make sure I'm never more than a few minutes away from a seat as my body can’t handle being on my feet for too long. If I don’t take regular sitting down breaks, I quickly go into a POTS flare up which makes me feel physically awful. So as soon as I start experiencing heart palpitations and dizziness, I make my way to the nearest seat as swiftly as possible so that I don’t end up passing out. I very rarely go out alone due to my medical problems, particularly POTS, but that’s just the reality of life with chronic illness. Postural Orthostatic Tachycardia Syndrome has even taken away my ability to shower as and when I feel like i

Musculoskeletal Therapist Update..

I don't know if I'll be able to finish this whole blog in one go as I'm in pain with my spinal hardware right now and all my joints have flared up, but I want to make a start now whilst today's appointment is still fresh in my mind. I'm typing this up on my phone from the comfort of my bed which is where I've been all evening after spending too long at the hospital. I went to see a Muscluskeletal Therapist who I was referred to earlier this year. He started by taking notes of all my health conditions and the symptoms, which took almost an hour in itself and then I had to have a physical examination. So that’s why I was there for so long. His job was to work out which route to go down in terms of exercise based on what I can and can’t do. I told him all about my limitations due to my spinal hardware and the protrusion of some screws, and I explained the problems I have with my joints due to my connective tissue disorder, Marfan syndrome. Image found on Pi

Finding Hope Through Pain Management

Earlier this year I was referred to the Pain Management Clinic at my local hospital and last month I had my very first appointment with the Pain Management Consultant. The reason I was referred to him was because I suffer from widespread chronic pain on a daily basis due to my rare health condition, Marfan Syndrome. All of my other Doctors have done and still do their best for me, but we needed an experts advice when it comes to my chronic pain. I had mixed feelings before seeing the Specialist though. I was optimistic because this was my last hope, but I was also a little bit skeptical about whether this would be worthwhile or not. I’d read some negative reviews online about the Pain Management Team and it was quite off putting, but I had to try not to listen to them as I didn’t want to end up talking myself out of attending the appointment. I needed this to go well so I tried to remain as positive as possible, although I still felt slightly doubtful.  As soon as I entered the consu

Marfan Syndrome Awareness Month 2018 (My Feelings On Diagnosis)

When I first received my Marfan Syndrome diagnosis many years ago, I felt like I had been given a death sentence. No word of a lie, I thought the Doctor was trying to tell me I was about to die. Panic was rising within me and shock waves ran through my body as she said the words Life Threatening Disease . My feelings have changed a bit since then, and I no longer want to punch the Doctor in the face, but at the time that was exactly what I wanted to do, because I was a furiously angry teenager who was literally just getting over spinal surgery and the last thing I wanted to hear was that I had another terrible health problem to contend with. I’d already felt isolated for the last few years due to the health problems I'd endured throughout my childhood, and now here I was again, sitting in front of the Consultant being made to feel even more abnormal as she told me I was the victim of a rare and serious "disease"  I vaguely remember storming out of the clinic that day