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