The “Well Being” team

My new support worker from my landlord #WakefieldDistrictHousing (formerly the housing department of #WMDC ) came today from her first visit. She brought with her a colleague who specialises in psychological support and sign-posting to #MentalHealth services.

As with all times talking about things both past and present in my life these days I was in tears very quickly and feeling very embarrassed with myself as a result. I feel ashamed at not being strong enough to deal with all the bad stuff but I am assured that this is not uncommon, in fact it is one of the biggest factors that prevent people seeking #MH support earlier. Because our society see MH as something shameful, that only affect the weak or that those affected are ‘nut jobs’, ‘mental’ etc people are inclined to bottle things up, grief, anger, anxiety, depression and when they do this the problems grow and fester, they merge and multiply, grinding you down with each day that passes. It is most definitely NOT a supportive society. Even your closest family members, the people you should be able to trust that most simply don’t get it, some do but the majority dont and when you as a sufferer realise this it really hurts and puts you in a very dark place.

In my own case my sister is a Chaplin to part of the local regions Police force, a good Christian woman who has supported my step-sister through her aspbergers, dysfraxia and the multitude of issues that all transgender individuals struggle with yet even she doesn’t seem able to accept that me, her big brother is unable to cope with any more problems in my life. My career was snatched away from me in 1996 when I was employed a Business Development Manager for a national cleaning company with personal responsibility for the whole of the North of England and Wales. My genetic condition, Marfan Syndrome affects just one person in five thousand and is in 75% of cases been passed on genetically as in my case, while one in four 25% are a spontaneous mutation where no family history is present. It is a defect in the Fibrillin gene which controls the elasticity and strength in every cell in your body. It affects every aspect of your body but each patient is different and as the Syndrome is made up of many identifying symptoms managing the condition can be very difficult for patients and medical specialists both.

I have all the following known issues and suspect that I have others yet to be identified. osteoarthritis in my spine hips and knees badly and other joints to lesser degrees, Kypho-scoliosis (curved spine), lumber-spondilosis (lower spine is twisted), Chronic Prostatitis, Constipation issues, a repaired aortic aneurysm and replaced aortic heart valve, a hole in the front of my diaphragm where is fails to meet my sternum as I have a Pectus Curvatum (pigeon chest – a bony lump which in my case is VERY pronounced).My armspan is greater than my height and my joints are hyper-mobile to varying degrees (double jointed) although I am luckier than many #Marfs (as we know ourselves) as many have REALLY pronounced problems and frequent dislocations that require putting back in which is an extremely painful process. My #Appendix had to be removed at 13 years old as it almost ruptured because over several years I had suffered severe stomach pains and Doctors were convinced I just hated school, which at the time was totally the opposite of how I felt. They couldn’t feel anything wrong with my Appendix until on one occasion it was realised that my appendix didn’t lay side on across the right side of my stomach as is ‘normal’ but what it actually did was to turn inwards at almost 90 degrees and it had come very close to perforating. Had they not found it I would have been in real trouble as Marfan patients also have issues with healing and with the heart problems we are at risk of endocarditis (an infection of the heart) so it could easily have proven fatal if not removed. If you are reading this as a parent of a #MarfanSyndrome child you would do well to watch for this in relation to your own child(ren) and perhaps discuss it with your GP is they are having severe pain in the area of the Appendix as I know others have had this also.

I also have crowded and weak teeth, well, what is left of them at least. I have a high arch palette (the roof of your mouth) and severe myopia (short-sightedness), -10.5 in my left eye and -12.5 in my right. The left has worsened in the last year by 2 full points and I have developed 2 severe cataracts which mean my entire world is blurred badly with anything further than a foot away. Writing and typing I need to be 6 inches from keyboard, screen or paper in order to use it/read it. It was this failure of my eyes that pushed my mental health over the edge, it seemed to be the straw that broke the camels back.  I am scheduled to have surgery on my eyes in the near future, my first pre-operative appointment is on Monday 31st October 2016 and trust me when I say it cannot come soon enough. My hobbies are all that kept me sane, helping to pass the time while I was trying to cope with being a medical wreck, my PC games, my drawings, photography and watching my film collection or reading Sci-Fi but all these are now beyond me and as I struggle to use the PC for this blog or Facebook I know I am really straining my eyes while I am doing so but what choice have I? If I just sat listening to the TV all day I would implode and likely do myself serious harm.

On Friday of this week the Psychologist is coming with me to see my GP to discuss my mental health problems and to ensure that my GP takes me more seriously than he did last month when I broke down into floods of tears in his office when trying to tell him all the crap that my life had thrown at me and how I couldn’t cope with it. His response was “What do you expect me to do about it?” in a very dismissive and disgusted tone. I asked where the supposed extra support for people with MH issues was, as government have been telling us is now being made available and he said simply there is no money. He was going to simply dismiss me until I pointed out that I am close to killing myself. He then decided to give me an anti-depressant but only a very low dosage and all that has done over this first month is to destroy what little sleep I have been getting because of both mental issues and also severe physical pain. She is going to demand that he ups the dosage and that he also provides me with some sedatives to knock me out at night before I snap and do something silly. I was surprised when she suggested her coming with me, and delighted to be honest. I have been with this Doctors surgery for 5 years now and they simply don’t get what problems I have, I am not convinced they have much, if any experience of patients with Marfan (sometimes called #MFS ). In truth many medical personnel have only a very basic idea of what Marfan is and this is despite several charities and thousands of patients doing all they can to raise awareness of the condition. In the main it only makes the news when a professional sportsman or woman drops dead mid match after suffering a tear in a major artery, usually an #AscendingAorticAneurysm near the heart or an #AbdominalAorticAneurysm. It is then that entire families suddenly find themselves coping not just with the grief of losing a much-loved family member but also, after batteries of test that others in the family have Marfan too and may need to change their entire way of life as a result of restrictions which MUST be put in place to prevent premature death.

I have decided to document my journey through the mental health process, especially as a #Marf in the hopes that it will help someone else, either to understand the struggles we face or the condition as a whole. Perhaps even encouraging medical professionals to do their own research into the condition, God knows many of them need it. As I discovered in 2013, before I underwent heart surgery to repair my #aorticaneurysm when I visited A&E with severe chest pains. When my blood test results came back I was asked if I normally had a high white cell count, “Is it normal for you?” they asked. It did nothing to calm my fears, in fact it heightened them as I realised no one on the shift that night had ANY experience of an actual live Marf!

I am really hopeful that as time progresses other Marfs will see this less and less in our health service, not just in the UK but across the globe as it is a planet wide problem. The recent idea being trialled where young people, even healthy ones are being assessed for cardio problems is a fantastic development as it is going to identify peoples heart problems BEFORE they drop dead. The cost of doing these tests will be far outstripped by the money saved in the longer term treating people at a time of life threatening crisis. I feel very fortunate to be living in this time. My maternal grandfather died through Marfan in 1963 at the age of just 46 years of age. My uncle got to 57 at this start of the century, I am hopeful of getting further than he thanks to great advances in genetic cardiology in the #NHS

I shall write more when I have had my appointment on Friday, for now farewell dear reader.


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