MY QUEST TO GET A FULFILLING LIFE ONCE AGAIN CONTINUES TO BE THWARTED BY MY RECENT DIAGNOSIS OF LYMPHOEDEMA!

I am a bundle of utter frustration at the moment, it’s a long story that has seen much anguish and many tears of frustration. Those of you who know me or who have read my previous ‘health related’ blogs will know what I’m on about.  I just want ONE thing out of life before my days end…………..THE CHANCE TO BE ABLE TO FINALLY LIVE IT ONCE AGAIN!

I’m a type one diabetic and my life altered when I got a prostate infection aged twenty-one. After I finished University I wanted to become a Careers Counsellor but first I knew I had to get to the bottom of the pelvic pain that I had. Eventually I found out what was wrong with my back, ribs, shoulder and pelvis. I should be able to get them much better with lots of manual therapy(physio).  I’d had just one trip to see a new physiotherapist when disaster struck this Summer and I got this awful rash on my legs called cellulitis. I then got diagnosed with a thing called lympthoedema, thus explaining the swollen ankles and lower legs I’d had for around eighteen months. By now I expected to have got on top of the lymphoedema so I could restart physio on my back, I haven’t however and so mentally it’s killing me!

After much thought, consideration and various chats with family members, we decided I should try and first get the lymphoedema improving before embarking on further back and pelvic physio. This also applies to getting more O.C.D help, I’ll be able to focus more on the C.B.T(Cognitive Behavioural Therapy) once I get the built up fluid in my legs moving(a by-product of lymphoedema). All this sounds very good in theory but as yet I’ve had no help or treatment for the lymphoedema and so I’m tired of waiting. There is a thing called Manual Lymphatic Drainage which is said to offer lymphoedema suffers some relief. It gets the built up fluid moving(I think) and luckily I have found two or three private practitioners who deliver this treatment in my area(it’s a bit unusual so not lots of people who do it).  I was just about to go and have my first session of this leg massaging done when I happened to talk on the phone to the Specialist Lympghoedema Nurse at my local hospital.  She said she would not go and have this MLD done until I’ve had a vascular assessment from a Vascular Consultant at the hospital. When ringing up and speaking to these people who administer MLD, they too said that they would feel more comfortable doing it on me once in receipt of a vascular assessment report. Therefore, I was stuck, the Manual Lymphatic Drainage had to be put on hold til my appointment came up to see a Vascular Doc at the hospital. Last week I had this appointment and I came away feeling a fed up, I still am now.

I was dreading going to the hospital for the vascular appointment(O.C.D wise) but knew I just had to put up the possibility of contaminating myself in order to hopefully get my legs improved.  I needed to get the ball rolling, I needed them to tell me that at long last I have their permission to have this MLD done.  It did not start off too well due to me not getting to see the actual Consultant who I’d been referred too see. This is the Vascular Consultant who the now leaving Oldham Lymphoedema nurse Helen Readie, said to me is the guy I want to be seeing.  Instead, I saw this young Asian lady doctor who I believe was his number two. I nearly refused to be seen by her because I wanted to be seen by the top dog, but I thought that would cause a scene and I don’t like causing them. I forced myself to try and give this junior doctor a chance and some respects I’m pleased I did because she was fine. She told me the usual stuff about trying to keep my legs elevated as much as possible and that compression socks may help. I frustratingly told her that I’m unable to wear compression stockings at the moment due to them making my sciatica and iliopsoas pain much worse…….ARGH. She examined my swollen ankles and said how she couldn’t feel a pulse in them due to the excess fluid. She told me that she would put me down for a lymphogram so they can look at the state of the lymph glands in my legs. It could mean surgery maybe but as my legs aren’t that bad then she doubted they would recommend such treatment. ie more conservative forms of treatment first. I was happy with her saying I should have such a scan due to the Lymphoedema Nurse saying to me on the phone prior that they might want to do such a scan. What I found soul destroying however, was her then saying it would not be done til after Christmas(due to waiting time).  She advised me NOT to have any manual lymphatic drainage done until after I’ve had the scan and seen them back in clinic with the results.  I am therefore STUCK……..AGAIN, life on hold until I have this f-ing scan done. I don’t feel any better yet regarding the lymphoedema because like I’ve already said, I’M UNABLE TO GET THEM TO SAY I CAN GO AWARD WITH THE DRAINAGE MASSAGING AT THE MOMENT. It does makes sense to have the scan done first before letting somebody massage them, I get that thinking about it rationally. Nevertheless, at the same time it doesn’t help me in the short-term though. With my legs swollen like this and pre drainage, I could very easily contract cellulitis again. This was proven when I got it again four weeks ago. Ended up taking the antibiotic Clindamycin for two weeks and currently I don’t know if I’ve just had a stomach virus or taking too many antibiotics has given me an infection of the gut. I feel like my body is constantly being poisoned with little energy.  I’m sure it’s something to do with this build up of fluid in my body and it not being able to drain away properly.

I am satisfied that I have been put down for a lymphogram, I just don’t want to have to wait ages for it though(no date yet), it’s the waitiing that gets me down.  After I’ve had the results this should kick-start the manual lymph drainage and me feeling better with the lymphodema. Once I’m on top of this then I can start the back and pelvic physio again which will then motivate me to try and tackle my O.C.D more. I am a fighter without a shadow of a doubt, I should get the ‘old Andy’ back in time…….I just need the real me to emerge sooner rather than later though!