Tuesday, 4 December 2018

The Last 72 hrs

When I started this blog all I was trying to do was raise some awareness of the condition I suffer with, the frustration of getting nowhere with doctors or benefits. I wasn't trying to be anything but me but as time has gone on and the lack of sleep over the last 72 hours has given me the time to ponder trying to take my mind off the fact I can't sleep, with the discomfort I've been having the fact that I've not been able to find comfort has given me time to contemplate what it is I'm willing to do to bring awareness of our condition while remembering the anxiety that lurks in the background. I've been lucky enough to have met some lovely people who in their own way understands chronic conditions and who have been advocates for their own conditions this has given me the drive to do whatever it is I can do for my own. I keep wondering how many people out there suffer from this condition how many people out there that needs a voice to get the condition to be recognised as even though it is said to be a rare condition many people around the world suffer from some form of the condition, but how many people out there are left in the dark by being miss diagnosed by there doctors as I've said many times before the research on the condition is very small and we can't expect our doctors to know everything about all conditions so the big question is how can we spread awareness how can we get help for those who are struggling to get a diagnoses but like myself how can we get people the support and management to control the condition and to answer the many questions we all have. 

Monday, 3 December 2018

Doctors update

So today I was lucky enough to get an appointment at the doctors and luckily enough it was with a male even though reception told me there were no male doctors today. So I told him the issues I was having over the weekend and he examined me his reply was that he couldn't see much swelling he also tried telling me my ankles weren't that bad with swelling that's when the research kicked in I explained to him that mine was Primary and that I also knew that there hasn't been very much research done on primary and that GP's aren't given very much training on my condition and although I haven't got very much swelling mine was genetic and my lymphatic system hadn't developed the way it should have. I also pointed out that I can see swelling on my hands and over the course of a week I've put on a stone in weight even though I haven't eaten any more than usual. I also pointed out that I have continued to increase the amount of time I spend in the toilet which could also attribute to more lymph fluid needing to be removed from my body. He asked a few questions then asked why I hadn't gone to see my specialist I replied how can I ask a specialist when I've never actually had one and the nurse I had discharged me 4 years ago as I couldn't wear compression garments any longer. He has told me he will be referring me to another specialist so fingers crossed it isn't long before I see one and in the meantime, it's more research to prepare me for that appointment.

Sunday, 2 December 2018

What`s Next for this condition in me

over the course of the last month, I've been looking at diagrams of the lymphatic system watching youtube videos and reading a couple of books based on the condition. Even though the research I've done has not actually explained what's going on in my lymphatic system the diagrams I've seen has explained a lot.



The books have explained that this condition will need constant management, which I've not had anyone involved in mine for at least 4 years. Luckily for me, I understand the dangers of infection but I didn't really understand why until I started looking at it. for a system in our bodies which in my understanding is the first line of defence against infection, why medical professionals don't get more training to understand this system is a mystery to me. The thing I was never informed when I did get management for it was how the body was able to push the excess fluid around the lymphatic system it uses muscle movement to do this so a moderate amount of exercise would be needed, but how much exercise is enough to keep the swelling down and what garments are most suitable to do this is probably why constant management of this condition is needed to answer these question. looking at the Diagrams and where the main clusters of nodes are situated they are roughly in the same areas as my discomfort is but does this explain the other sensations in my arms and back can the tingling be because of the muscles trying to push this lymphatic fluid around my body or how close are they to our nerves the more I think the more questions I come up with   but over the course of the last 48 hours I've had this annoying discomfort in my groin area and I'm not ashamed to come out and say it the testicle area also this has the same feelings as I got in my legs all those years ago so along with the nodes in my neck and groin these sensations are moving I've a feeling this condition can move to other areas of the body but with no proper research how can they disprove me or how can i prove them wrong. There is going to be a struggle to get the doctors to take this seriously as they will more than likely try saying that it will be something else but after 3 years of doing what I've been asked to do, the tests I've had to endure the travel I've taken and the anxiety that its caused when does the time come for me to be firm and get them to take the Lymphoedema seriously remind them that in all there training they are only educated less than an hour on this important system of our bodies














Saturday, 24 November 2018

Latest update

Today I've had to endure yet another test this time involving an upper and lower limb SSEP. This has to be the worse test I've had so far, it involved having sensors stuck to my head and other areas of my body and having my nerves stimulated with electricity this was definitely uncomfortable to measure the time it took from the feet to brain and hands to the brain. The hands were bearable but when they went to do the feet that's where the issues started they had to try and warm my feet up, not sure if anyone else has issues with body temperature but I'm usually feeling cold doesn't matter where I am or what I'm wearing and being winter its a struggle to keep warm. They asked if I could sit still and relax so the test would be quicker that was issue number 2. My legs don't like being still and the more I try and I keep them that way the more they become uncomfortable they become. this set me off for the rest of the day being in some sort of discomfort and with issues with the train line made my day very uncomfortable. with all these tests that I'm being sent for I'm starting to think how long will I continue to play their game how long will I continue to be sent for test which I know won't come up with anything as all others have come back clear, how long before they actually listen and look further in to the condition that I'm already diagnosed with.

Thursday, 15 November 2018

Technical ability

Quick one thank you for your comments I'm unsure if the replies are going through as I'm slowly learning how to use this there is a link at the top of the page to my Facebook page or you can search @meandlymphoedema in the search function. I know how to reply there thank you again for taken time to read my blog

Wednesday, 14 November 2018

Frustrations

I was asked to elaborate on my frustrations, I suppose there are a lot of things that I can be frustrated about concerning this condition. Lack of understanding not being believed that this condition is causing the symptoms it's causing, being told by medical professionals that lymphoedema doesn't cause pain yet everyone I've spoken to says the same. Going to my doctors with lymph nodes that feel hard being sent for MRI scans to be told that there isn't anything unusual with them but how can they be ok when you can run your fingers over them, worrying over a virus and wondering if more nodes are going to do the same.     

Generally most days I wake up thinking what discomfort is my body going to put me through that day, hoping that the weather is going to nice to me I've worked out over the years that the weather plays a pivotal role warmer weather gives me some sort of relieve and the colder the weather the worse the discomfort is going to be. I spend most days with a sensation of my legs being heavy a sensation of being stiff even though I have movement walking too long brings a stiff heavy leg trying to drag my leg along with me, sitting for too long brings its own set of issues, I can't drive for too long without getting a discomfort in my left leg and thigh and recently this pain has gotten to my knee the frustration sets in as I spend the next few days suffering in pain even after a very short drive. 

The frustration of being in pain and the only option you get is that of an opioid, the frustration that brings trying to explain to doctors that your unwilling to take those as that in itself brings another set of issues reading the warning labels to see that there is a list of possible side affects which a lot of them reads could cause death. The last 3 years i have been put on many different prescription drugs, Tramadol was like a bad trip sitting for hours as if I had taken some MDMA but without the pleasure. I had a very short addiction on codiene well my body did but luckily for me, I don't have an addictive personality. 

as I have already written about I have used cannabis for over 20 years which looking back on it now its always been used as medicinal but it's getting harder and harder to find a strain that will help me in one way or another this whole prohibition of a plant has to end we have to have the option to medicate the way we want to it should be or human rights 

Tuesday, 13 November 2018

Self care

This is something that is an important part of my day learning from different people in the many groups on the many blogs covering this condition. I was also fortunate to have been accepted on a pain management program where we were taught many things about chronic conditions, pain and other issues many people live with on a daily basis but one of my favourites were Mindfulness what I took from this was thinking about yourself learning what you can and can't do and not trying to over do it in activities. I'm starting over again learning what my body can and can't do, slowly learning and teaching my body how to do things again finding time for me finding ways to help my body. This is a life long condition a constant battle a battle that can't allow to beat me

Friday, 9 November 2018

DWP and PIP

During this whole process the words chronic condition has been thrown about but my issue is you have what the NHS describes as a chronic but then we have our government bodies they really don't look at most chronic conditions as an issue they don't really care about these unseen chronic conditions as to having any problems for the sufferer. The last 3 years I've had a constant fight with the different departments of the DWP I've got the job centre unwilling to help me find a new career because I've got a condition to manage throughout the day but then we've got PIP or their assessors Atos and Co declaring I'm fit for work which is now in the hands of the appeal judge and that process has been a slow process how many people a day does these judges have to see how many cases are on there desks as it is been a year and 7 months how does our government expect anyone to find a life when they are happy to leave people struggle I can see why so many have turned to death to get away from the inhuman activities of the UK government

My personal experience of this condition

Since I discovered that something wasn't right, I became self-conscious of my legs always keeping them covered which wasn't hard to do since I worked all the time. But I suppose it was the anxiety the fear that someone would notice the misshaped legs and I would have to try and explain something that I knew nothing about but I had two battles ongoing the anxiety over a condition that I didn't know I had, but the physical symptoms that I was living with the pain and discomfort that 12 hour shifts working in kitchen brought ending the day with an ankle that looked like a rugby ball struggling to take the socks off my feet, the discomfort I felt in my body somedays was unbearable I would use different substances to cope with the discomfort I have used cannabis for almost 20years to help keep my mind somewhere else just to lose myself from reality and the discomfort I was in. I would use different recreational substances so I was able to have the social life I don't think I would have been able to have in the discomfort I was in. The older I got the worse the discomfort through the day got  it was getting to the point that after a long day in work the drive home was even worse trying to change gear with a leg that I still to this day I can't describe the sensation I got. the feeling around the lower back was like a sensation of a clamp crushing from the top and bottom and the longer I was on my feet the worse it got to the point where I had the sensation of my back being in an electric shock and cramping up and it was at that point I had to take the decision to leave the industry I had spent my life in. That was only the start of my journey I was diagnosed with a chronic condition lost in a world that I hid away from realising that I was institutionalised to an industry that I embraced and became my identity. I was lost kinda still am trying to work out what my future has in store for me looking to understand the condition I was born with and work out what path I am to walk where my path continues all while trying to work out what's happening to my body.

Wednesday, 7 November 2018

What's the difference between Primary and Secondary

Unfortunately, this condition comes in two forms as the title suggests in this I'm going to try and explain what these are currently Primary and non-cancerous lymphoedema are currently ignored by research. currently, either has a cure and what I've researched not many organisations have actually put much research into these conditions, Primary is a mystery, is it due to the nodes not forming correctly or not enough was formed as our body developed into adulthood or is it simply something we were born with as I've read articles describing that young children have been born with it which must be hard considering little or no knowledge regarding this type is out there.

Secondary is generally after some form of surgery, illness trauma or a side effect of cancer treatment such as radiotherapy or the removal of lymph nodes which will damage the lymphatic system 

Monday, 5 November 2018

my journey

My Journey was a long road of discovery as to why my ankles would be a lot bigger at the end of the day as it was at the start of it. At different points of my life, I would seek help from the different doctors in the different areas of the country I had worked in trying to find the answers as to why this was happening id get frustrated with the same routine id have to go through trying the same prescription drugs for water retention because they all had to follow the same routine as the rest of them, not believing me that I was in constant discomfort with it even though my career had me on my feet for 12+ hours a day I had a reason to keep going I fought through the discomfort for many years learning how to manage a condition I didn't even know I had. Working out that my feet would have to be elevated but that wasn't easy considering my occupation revolved around standing on my feet all day long I struggled through my 20's with the pain and discomfort. I had a terrifying experience in my mid 20's while on holiday in Rome when my left ankle had swollen more than it had ever done before hobbling around the city centre looking for a hospital to try and get help for my ankle which was burning hot had changed colour to blue and red not speaking a word of the language not knowing what was going on having four nurses surrounding me  trying to break the language barrier to try and help and understand what was happening being given a prescription for something to take that would eventually help, then around the time we were expecting my daughter I gave it one last try to find out what the issues were  that was when I eventually found out that I had Primary Lymphoedema but that was when the journey would begin to get harder I knew I had a chronic condition but it was a condition that not very many people would know about. 

Friday, 2 November 2018

What is Lymphoedema


As a sufferer of this condition that had developed in my teens, it wasn't diagnosed until I was in my 30's everything I have learnt about this condition has been through searching the internet and reading the many blogs and papers written on this subject but yet I feel like I still nothing about the condition itself below is a section taken from NORD a small description of the condition 

This is a chronic condition listed on the National Organisation for Rare Disorders, this condition is a genetic developmental disorder that affects the lymphatic system this system is a circulatory network of vessels, ducts and nodes that filter and distribute protein-rich fluid throughout our bodies, In hereditary lymphedema, lymphatic fluid collects in the subcutaneous tissues under the epidermis due to obstruction, malformation, or underdevelopment (hypoplasia) of various lymphatic vessels. This is the same confusing information that can be found on most sites but from a sufferer of this condition it doesn't exactly help you to understand it doesn't help you prepare yourself for what the future holds living with a chronic condition that has very little understanding trying to work out what all the medical terms are for a condition that the medical professionals seem to know very little about, 

I've started this blog to not only help spread awareness of the condition but to help me understand from learning from other people who are unfortunate to suffer from this condition 

Thursday, 1 November 2018

Quick Introduction about Me

 My name is Craig Davidson I'm a 36 yr old male born in 1982 in Dundee Scotland I'm lucky to have a loving partner Lisa who is caring an understanding and a loving 6 yr old daughter. I have decided to write this blog because I have lived with a chronic condition named Primary lymphoedema since I was 17 and even though I have experienced many things in my life and feel privileged and proud at what i have achieved I feel I need to share my experiences living with a condition that is on the list of rare diseases from the world health organisation and help bring this condition to the public. I'm new to this blogging thing and I'm unsure as to how to write one, please instead of commenting negatively, can you please simply explain how I could do it better.  everything in this blog is my own experience of this condition but I would love to learn more from fellow sufferers