Lu's News

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...

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...

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 c...

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 ...

It's been two days since my last Cardiology appointment & I'm still thinking it over. I haven't discussed it with anyone, but it's been on my mind a lot. I was there for my regular check up and I was given the results of my last echo. The Doctor said it looked reassuring overall, but my aorta has stretched ever so slightly. I felt the panic rising within me and I started to sweat as I listened to his words. I must be hearing this wrong. My heart has to be OK. I had to gather myself back together quickly so I could take everything in. He was telling me the stretch to my aorta was very, very slight & was not a cause for concern right now, as long as I carry on being closely monitored. But I was not expecting this. I expected to be told my heart was perfect like all the other times, but this time was different & I was worried now. I didn't know how to feel when I left the clinic. I was truly happy that the Doctor thought it was nothing to fret about at ...

It took a lot of courage for me to tell my Doctor I'd been living with and suffering from depression. I had kept quiet about it for so long but eventually I found the bravery to ask for help. I thought it would make me feel better but instead I came away after the appointment feeling disappointed. My effort had been a waster of time as my Doctor had shown little concern. He told me to refer myself to a councellor & said I might be on a waiting list for up to 3 months. He told me there was nothing else he could do & I got the feeling I hadn't been taken seriously. I wasn't happy but I had to accept it.  I came home & phoned the referral line straightaway and they put me on the waiting list. All I could do was hope I'd receive an appointment quickly but unfortunetly for me my referral didn't come through for another six months. SIX months! I had spent all that time feeling let down & forgotten about and I couldn't even go back to my Doctor as he...

This blog is an unexpected one really as I've never planned on sharing my scar on blogger before, but when I looked back at the full length photograph of my scar that my Mum had taken, I realised what an eye-catching photo it was and thought it would be an interesting topic to discuss. So here I am, showing off my 14 inch spinal scar that I've had since I was 13 years old due to needing a spinal fusion to correct an aggressive double curve. As you can see, I was cut open from my neck to my waist but luckily I was left with a very neat scar. The protruding hardware that you can see poking it's way through my skin is more noticable than the actual scar and that's because the bolts & screws are looser than they should be, but that can't be altered now.  I've never shared my scar publicly before because it's not really seen as a popular thing to do, but I don't care. I'm not a follower and I won't keep it hidden to please others. I will show ...