Wednesday, 10 July 2019

Latest annoyance

It's been awhile since I did anything on here hadn't really had much to say. I received the latest appointment letter for neurophysiology clinic, now this wouldn't be so frustrating if I hadn't already had different nerve test but this is where the confusion sets in they want me to have the same set of tests done all because the that were done had been done in a different London hospital personally i thought these tests were the same conducted by professionals trained in the same feild.  Now for them to tell me it's just a tingle I had to laugh I've had a few mishaps in kitchens with dodgy equipment and have received a few shocks in my life well none of that had prepared for these tests can't really think of anything worse to be doing but if it's the road to answers then I'm along for the ride. The same appointment it was discovered I've a collapsed vein in my left leg but with no explanation of how it could have come about or how it will and affect the lymphoedema I only got a few questions from the consultant which my answers were no and now I've still not a scooby as to why I've got it and with the curiousity shifting to my right is that what's causing the discomfort in that one. One of my biggest questions is on life itself when did society stop explaining things how do they expect us to understand anything if it isn't explained to us and try explaining something to them and they don't listen, I've been told to continue wearing knee high compression but what they don't understand is knee high ones are pushing more fluid in to an area that also needs compression to help circulate if not the discomfort is unbearable so why inflict more on myself.

So next few months is another waiting game e



Tuesday, 5 March 2019

March

Its been a while since I wrote anything but with the warmer weather that seems to be trying to come out and the hope that with the warmer weather comes less discomfort I thought an update was in order. 

March has always been an alright month I get another year wiser and the thought of summer nearing gives me a sense of relief but since I got diagnosed with this condition, 
March also has lymphoedema awareness week where around the world people help share their stories regarding how the condition affects there life.

I'm fortunate to have had the chance to share my story most recently with a company from the UK called pebbleuk.com who have also kindly gifted me a pair of men's stockings these are well-made stitching looks really nice and tight and all round these are well made, I must admit although I fully understand why compression is vital to help manage the condition and once on they feel reasonably comfortable but taken about 20 mins to put them on fighting with a swollen leg to stay still long enough to start them off is a bit frustrating and I'm unsure how comfortable they are going to be once the hot weather really kicks in. I will admit that these are a lot better than the ones I was prescribed with a few years back which makes me wonder why they weren't suggested after I had to stop wearing the thigh-high stocking that I was given. I understand that like everything in the NHS they are tied by who they can get them off which can leave many people feeling frustrated because the alternatives can be pricey and with this condition being chronic and along with other self-care needs, more help needs to be provided to help people manage this condition  

Friday, 4 January 2019

What are the Guidelines

I had previously written to my mp regarding Lymphoedema and I received a response from them which I found very good, in this letter the MP discussed something about internationally recognised guidelines when it comes to diagnoses treatment and support of Lymphoedema. so over the last few weeks, I've been looking into what these are and have found these very frustrating,

 Heres the link to the British Lymphology Society standard of practice  https://thebls.com/public/uploads/documents/document-64791511440750.pdf

If these are internationally recognised guidelines then something is wrong since my diagnoses I was referred to a nurse but was discharged cause I couldn't wear the garments on offer but no alternatives were discussed and no support groups were ever mentioned to me. The self-care I had to learn myself and this is very important for daily living. Luckily there are many different pages and blogs from fellow sufferers and social network is also a good source of knowledge learning from others for me was vital to understand more about the condition I was born with. what can also help would be a support group national or local groups are available 

  The L-W-O website gives non-medical tips and advice and is written entirely from a patients point of view. https://www.lymph-what-oedema.com and they also have a facebook community and facebook page

The LSN is a registered charity run by people who live with lymphoedema and is the largest information provider about the condition in the UK. Visit their website for more information www.lymphoedema.org


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.