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 it because it brings on a POTS attack and my body can’t handle the stress it causes. unfortunately my personal hygiene often has to suffer because I have to wait until I feel mentally prepared to take on the challenge. I always try to shower at night time because I end up in bed afterwards due to physical exhauston. POTS doesn't affect everyone in this way though. Some people are fortunate enough to only experience mild symptoms, but for people like me, it can be more debilitating and affect the quality of their everyday lives. It can affect anyone at all, but it more commonly occurs alongside a more serious health condition such as Marfan Syndrome, which is the case with me. I was diagnosed with Marfan Syndrome as a teenager and at some point I want to discuss all the secondary ailments it's brought with it and how they also affect my life, but I'll save that for another time. I just wanted to bring light to POTS today because I feel like it needs more awareness than it gets.

Postural Orthostatic Tachycardia Syndrome is an autonomic abnormality of the nervous system, causing a drop in blood supply to the heart and brain when a person is in an upright position. So that’s why I’m unable to be on my feet for a length of time. The typical symptoms for me include heart palpitations, dizziness, nausea, sweating and fatigue. I often end up going for a nap in the middle of the afteroon as POTS, along with all my other health issues, has drained me of all energy. It's not a curable condition, but medication is keeping my heart rate steady at the moment, rather than shooting up and down erraticly throughout the day. It still increases rapidly when I suffer from a POTS attack though. A few other things are supposed to help ease the symptoms, such as drinking plenty of water and increasing salt intake. So I'm often pottering around the house with bottled water in my hand.
                                 Life as a Postural Orthostatic Tachycardia Syndrome Patient
By Lucy Atkinson..x 

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.

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Whilst he was assessing my joints and range of movement, I began to suffer from a POTS (Postural Orthostatic Tachycardia Syndrome) attack which is a secondary condition of Marfan syndrome and causes palpitations and dizziness. It was brought on by so much moving around during my physical examination so we had to bring things to a halt whilst I sat on the edge of the bed waiting for it to pass. I knew it was going to happen because I could feel myself getting lightheaded and sweaty, but I stupidly carried on and tried to persevere with the therapists assessment so that I didn’t have to disappoint him by saying no, when in actual fact I should’ve just said “sorry, my body isn’t capable of doing this much.“ Instead I pushed myself and ended up over doing it but luckily the Musculoskeletal Therapist understood and we gave up on the examination for the time being.

I sat in a chair next to my Mum (who was with me) to fully recover and the therapist talked to us about Pacing oneself, which was very fitting given what I had just done. He said he thought it might be wise to teach me how to practice Pacing at my next appointment. I know a little bit about Pacing but I have never properly practiced it. So I'm looking forward to that. He went on to tell me that my joint problems and chronic pain can't be cured because unfortunately Connective Tissue isn’t fixable, but if it’s done in the right way, we could try building up muscle strength which may enable me to cope with everything better. Apparently if the muscles are strong, my body might not feel as much pain. I don’t know if there’s any truth in that but I’ve agreed to give it a try. So once he’s taught me the rules of pacing, we’ll move on to building up muscle strength and see how that goes. I don’t know if it’ll go the way it’s supposed to, but one thing I do know is that I have a long journey ahead with the musculoskeletal therapist.

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 consultants room on the day of my appointment, I discovered that I needn’t have worried. It turned out to be the complete opposite of what I had heard beforehand. His knowledge immediately removed some of my doubt and he had a kindly manner which put me at ease. As I spoke to him about my health problems and my battle against Marfan Syndrome, He listened carefully with obvious concern and I could tell he understood my every word. It was such a relief to be in the presence of a Doctor who got what I was saying without me having to over emphasise everything. I got the feeling that this appointment was going to be beneficial to my needs and I was finally about to be offered some kind of help.

 It wasn’t quite as simple as that though because Marfan Syndrome is a genetic disorder that can’t be cured or fixed, so my treatment options are limited. As he explained this, I did feel a little bit disheartened. It was a grim realisation to hear a Doctor telling me my health problems can’t really be treated, even though I already knew it. I think I must’ve had a dispirited look on my face at that moment because he then went on to say he could refer me to a counsellor who specialises in understanding the psychological impact of living with health conditions, and needless to say, I accepted his offer without hesitation. He then began to talk me through some alternative treatment options that he thought would help to ease my chronic pain for short periods of time. He gave me as much detail as possible and he offered me the chance to say yes or no. I didn't feel forced to say yes to everything just because he was a Consultant as he told me the choice was entirely mine.

After some discussion, we decided which treatment options to choose and I was finally coming away with a plan of action. I'm going to be on a few long waiting lists which isn’t a joy, but it’s only to be expected. I can’t express the amount of gratitude I have for that Doctor though and I would highly recommend a Pain Management Consultant to anyone else in my position. He made me feel like there is a tiny bit of hope. He wants to keep me on as one of his patients for a while as my case is too complex to be dealt with in one appointment, but I’m happy with that. Talking to him made me feel a little better, so I’m more than willing to attend regular appointments at his clinic. He told me I have a long journey ahead, but knowing I have the support of the Pain Management Team makes it seem a lot less daunting.

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 in a flaming mood (and if you were to speak to my Mum) She'd tell you I did that on numerous occasions throughout my young teenage years. I pretended I didn’t want to know what the Doctors latest thoughts were on my health, but in secret, I was sitting alone in my room at home and Googling Marfan Syndrome on my old Samsung pay-as-you-go mobile phone. The information I was being fed from the Internet only made my anxiety worse, as back then a lot of it was outdated, but I was too young to realise this and I believed I was going to face my mortality as a young adult, which was what happened to some Marfan Syndrome patients a few decades ago as it wasn't easily detected back then. When I think back to that time now, I feel sorry for the girl I was then: emotionally damaged, angry at the world and unwilling to co- operate with anyone. I want to go back and guide her, but nobody could, because she was far too fiercely stubborn to let them.

After “that appointment”, the one that made me feel "diseased", I had some more follow-up appointments to attend for tests and examinations so they could establish exactly what my symptoms were and how to deal with them, but once again if you were to speak to my Mum, she'd tell you I did my very best to swerve every single appointment. “My poor Mum” is what I think to myself as I sit here typing this now. If I wasn’t avoiding the appointments altogether I was running out of the clinic faster than my legs could go and leaving her sat there alone. I didn’t want to face reality and I couldn’t cope with sitting in front of different Doctors while they pointed out what was wrong with me. It was emotionally and mentally damaging, especially hearing them talk about how I had the physical appearance of a typical Marfan Syndrome patient. That doesn’t bother me so much now, but it made me despise myself with a passion to be told as a teenage girl that I had the typical look of someone who was "diseased". Of course I wasn't diseased though, that was just how I felt about it. I happened to have a Medical Condition that was sometimes classed as a disease, but that didn't mean I, as a person was actually diseased.

Fast forward a few years and here I am speaking out about the rare condition that I never thought I’d accept. In fact, I think hiding it for so long has made me want to speak out even more now, because I want to give that young girl I once was a voice, as hers got lost in the midst of her suffering. And who knows, maybe, just maybe there's someone else out there in the world going through similar circumstances and they might take comfort in the fact that they can identify with my blog post. If I'd have had some real life personal stories to relate to when I was younger, then perhaps I would’ve struggled a little less.

The Critique of my Marfan Physique.

Written in response to the unwelcome yet frequently made remarks on her strikingly slender physique, Lucy’s piece will resonate with many ...