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My Silver Anniversary – and just found out I am a ‘Lymphie' by Ann Marie

Yes, that’s  Yes, that's right. I’ve had primary lymphoedema for 25 years and you have no idea how much better I feel knowing I can call myself a ‘lymphie’…Why?  Because for 25 years I thought I tt thought I was  alone. I mean, I had heard that other people had lymphoedema but they were unseen figures who lived in unknown places.

My story started when I was in my late 30’s. I was 9 1/2 stone and a size 12 and no health problems.  My first sign was a small swelling just behind my left ankle bone.  It wasn’t painful and I didn’t give it much thought.  Over the next year or so, I would mention it to various practice GP’s or nurses when I took any of the children. The response was always the same, “ just keep your feet up”, “wear support tights”. It was when only other people started to pass comment on my ‘swollen ankle’ that I decide to make an appointment with my GP specifically to discuss my concerns.  Well...I was met with a barrage of questions e.g.  “Why haven’t you been to see me before? You are my patient and I’ve never seen you’’.  He was absolutely furious when I re-iterated the advice his colleagues had given me.

 So there my journey started …

I was up on the examination table within 5 minutes, being very intimately examined much to my shock ! Then every week for 6 weeks I was at just about every department in the hospital for investigation. I had blood tests for goodness knows what and was seen by cardiac, vascular and gynaecology specialists. I was even strapped to a table with an additional item in a very private place whilst I was x-rayed from every angle…the outcome was that my bowels  “are very photogenic”!  But nothing compares to my experience with the endocrinologist! This was to be my last test and one which I will never forget. 

Now you n Now, you need to use your imagination here...Remember, I was going with a swollen left foot. ‘’Jump on the bed”, he said. So I popped behind the screen, took the knee highs off and sat off and sat patiently.  In he comes and I was met with a very puzzled look… “You need to take your trousers off’’.  “Really?”  Oh well, I pondered,  he must want to see my full leg. So, do  leg.  So, down came the trousers.  He had a quick look at my foot, didn’t bother with my legs and told me to turn round, face the wall and lower my pants!. “But…it’s my foot!” I squeaked “Yes, but I need to examine you”   I did as asked (although at the same time wondering if this was a ‘set up’ and Jeremy Beadle was nearby!).  So, after having dutifully obeyed and lowere I lowered my knickers, he had a wee look and at my  ‘posterior’ and said he’d be back in a minute.

Now…. I kn Then, I saw two feet leaving the room but a couple of moments later, four feet returned.  As I lay there in trepidation as to what was going to happen next, the curtain opened an opened two doctors were staring at me. ‘’I just had to go and get a camera” says he!  Eh!!  "A camera?"  What for?  Is this real?  Why is there another doctor here?  A hundred thoughts r  thoughts raced through my mind, including grabbing my drawers and doing a run for it!  But all I could do was lie there as I was photographed from the inside out !! I returned  I returned to work absolutely traumatized, whilst my colleagues fell about in hysterical laughter ….I too can now see the funny side but really? 

So, after all After all my investigations which thankfully proved negative to any adverse medical conditions, Primary lymphoedema was diagnosed.

 Then virtu Then, virtually nothing… yes….nothing for another 10 years!  GP said there was nothing that can be done so I started researching  the condition independently. I read about compressi  compression stockings and bought them online even though I didn’t know what size or compression I should use (and probably made my condition worse).  Eventually, I found a Mf found a MLD therapist who actually had travelled to Belgium for training and was disgusted at how lymphoedema was dismissed in the UK.  She wrote to my GP and told me to insist th me to insist he referred me to someone trained in the condition. I was referred to a vascular consultant  and 2 years of nothing more than a  “how are you?’’ told me  “ yes it is ugly and g  getting worse but there is nothing I can do’’ but thankfully he did refer me to Strathcarron Hospice where the Lymphoedema nurses were based.  Yolande, was my lympho specialist a specialist and she was so supportive and fantastic. By this time, over 10 years had passed. My left foot had deteriorated and fibrosis had set in.  I was injected with radioactive radioactive dye and it was confirmed that most of the lymph nodes in my foot do not work, I’m not suitable for surgery and there is nothing that can be done to improve it, only outwi  I have to self-manage my  lymphoedema treatments.  Approximately five years ago, my right foot started in the same way, a small swelling behind the ankle and it has deteriorat  deterioated, quickly.

Having bot Having both feet affected, has at times been soul destroying and depressing.  I have had to completely change my life as I have also developed peripheral neuropathy, affects boI I was always an outdoors person who thought nothing of walking for miles and driving for hours to take photographs or go to belly dancing and Zumba classes. I can’t do that now, but I  now, but I can do other things.  I can still enjoy my art/craft work and attend Tripudio and yoga classes (even if I have to do most of the exercises sitting down), I can go to the swimming  swimming pool and meet friends.  I am in the process of  being medically retired and my career is ending.  Having worked since I was 16 years of age, I am now a 61.  I can’t say I will m say I will miss getting up at 5.30 a.m., every morning to do an hour of self-management before I drive the 45 minutes to work through nightmare traffic. Nor will I miss spending    spending my evenings and weekends trying to get the swelling down enough to start work the next day or the ready for Monday mornings.

But best of Best of all,  whilst I had to relocate to be nearer family so they can help on the bad days.  I get to spend more time with my three grandchildren.  Children are always sure to bring youb bring you back down to earth with a bang.  Recently, I was sitting on the edge of the bath whilst my 3 year old grandson, was demonstrating his recently found independence by sittingb  sitting on the toilet seat unaided.  Deep in thought and cursing the pain in my feet, a wee voice piped up. I left my void of self pity to acknowledge him. There he was, eyes wide open  wide open and looking aghast, “Gran Annmarie…you have a really fat belly’’… Trying not to display my total shock and breathing in to the extent that I almost toppled backwards into the bath…he then goes on to say “you have a very fat foot too but your other foot isn’t as fat.  Do you not want them all to be fat?”.  There is nothing like a child to bring you back t  you back to reality and make you giggle.

Yes, there  Yes, there are days when I am sad, frustrated, exhausted, sick of being in pain and Yes…angry.  However, everyday, no matter how awful I feel, I give thanks for what I have and try to rto remind myself that I still have lots in life to enjoy.  What is also wonderful is that there is so much more research being undertaken, awareness of lymphoedema is improving  improving and one day there will be a cure.  In the meantime I take comfort in knowing that  like you…I AM A LYMPHIE..

Photographs of Ann Marie, her feet and legs and a family day out at the beach

 

                                              

 

 

L-W-O © 3rd November 2017

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