Tuesday, 26 November 2013

Doing too much.....AGAIN!

Well yesterday was a very exciting but scary day for me.

I was going back to my beloved gym and to my trainer Kane after 3 weeks of doing nothing. It's hard to do nothing when you're used to doing quite a lot! This comes after doing next to nothing for most of my life.

Last year I ran (well, ran and walked a fair bit) a 10k (6 miles) for the first time ever. I was dressed up as Santa, along with about 2000 other Santa's. Some people were doing a 5km but Kane & I decided we should go for it. I trained quite hard for it and on the big day, more and more people passed me, but I did cross the finish line. I actually came officially last....yep, not something you'd normally be proud of, but I actually finished! Other people dropped out, so technically, I guess I wasn't really last (you keep telling yourself that love, lol!)

Here I am crossing the line, amazed at what I had achieved!

So yesterday was supposed to be a good day. My legs were looking good, I was feeling good. I walked around the lake at work as a warm up. Took me 40 minutes to do a 2.2km walk which would normally take me about 25-27 minutes, but that was ok. At the end legs were good to go!

At the gym we worked fairly hard on some weights on the upper body, and a fair bit of stretching. Nothing overly challenging and again I felt no pain, and felt good. At no point did my body say 'OWWW!' to me.

Driving home after about 10 minutes of the 20 minuite journey I started to feel very strange. I could tell I wasn't concentrating and I felt I was just looking at other things, other than the road! As I drive through a fairly rural area it didn't feel safe to just stop. So stupidly I just kept going. I was like one of those cray people staring out of the car window, hands gripped on the wheel, willing myself to get home.

Once home I started to cook dinner, pasta with bolognaise sauce, how difficult is that to make? Quite when you feel completely spaced out and feel disconnected! My husband came in about 5 mins later and said 'are you ok', 'no, you're going to need to finish this'. I sat down and then the shakes hit me with a sick feeling. Very very scary!

I forced myself to eat and then we just sat there. I looked 'monged out' but I was experiencing what I believe to be a low sugar moment, hypoglycemia. After about an hour I started to feel better. And tiredness hit me. I felt very emotional and felt very silly about 'doing too much'. I went to bed and more waves of tiredness hit me.

I feel perfect today. Nothing hanging over from yesterdays problem. I've bought some glucose sweets to keep in my bag in case it ever happens again. And yes, I am going back to the gym on Thursday, but have told my trainer we've got to take it down a notch.

And everyone was right about doing too much!

Thursday, 21 November 2013

Gory Photo Time!

So here are the photos taken after my surgery...finally I hear you shout!!

This is me literally moments after the surgery. I'm laying on the surgery bed and the Professor says 'smile' and I did! The other picture is of the fat they took from my legs, all 4 litres of it! The red fluid below isn't blood, but fluid with a few drops of blood in.

These photos were taken the day after surgery and before flying home. I remember being quite shocked by my legs but putting a brave face on. I was thinking oh god, what if it stays like this? I had been warned by the Professor that there was a chance that may happen but thankfully, the skin has retracted bag. I guess at this point it was like emptying a plastic bag and expecting it to just bounce back!

Wednesday, 20 November 2013

Getting Diagnosed.....

I was always a big child from a family of relatively slim people. I was a little greedy perhaps, but no more than any other child. I remember being called 'tree trunk legs' by a horrible boy when I was about 11, he was pretty spot on.

I was diagnosed with lipo-lymphedema (I'm from the UK so we spell it a little different) in Sept 2011 by Professor Peter Mortimer, the leading UK specialist. I had paid for a private appointment after spending the previous year on a new diet and fitness program & working with a hypnotherapist. Part of her work included dealing with food issues and triggers, and some counseling. She was upset to see me so incredibly happy in my life, except where it came to my legs. I had spent many an appointment in tears over my legs, feeling like I looked a freak, re-living hurtful remarks made by people including my family. I said I was sure I knew what I had so she pressed me to get some help and found a MLD therapist for me in my local area.

I went to see Lucinda Careswell and she immediately confirmed I had lipo-lymphedema. She initially started a program of MLD and we then went on to a week of bandaging. Boy, that was painful! It felt as if my skin was going to fall off & I was exhausted because I wasn’t sleeping! But at the end of the week I could see a real difference. I continued with MLD on a weekly basis. My big & hard legs were softening up and I stopped feeling that completely stretched, ‘oh my God, my skin is going to split’ feeling quite so often. My mother even sent me a clipping from a national newspaper who did a double page spread on lymphedema, as if it wasn’t something I’d been telling her about for such a long time. Maybe she finally understood?

I then decided to make an appointment with Peter Mortinmer to see if I could get a diagnosis and see what sort of help I could reasonably get. I was amazed how easy it was for me to just book it! After making the appointment I was quite scared. What if I wasn’t ‘ill’ and if I was just fat? How ridiculous would I look then!? But when they day came and I went to the appointment within 10 mins or so of an examination and a brief bit of family history Professor Mortimer confirmed my diagnosis of lipo-lymphedema of my thighs and my calves area.At this point I had lost about 4 stones in weight. He advised me to be careful about losing too much weight as it was important to keep a balance between the top half and the bottom. No other medical professional has ever said, ‘don’t lose weight!’ before. It was such a freeing experience to actually know that it wasn’t my fault. I felt as if a weight had been lifted off my shoulders.

Some years previously I had been to see my Drs because I was worried about my legs. They didn’t seem to be the right shape especially for an overweight person. Obese people do not have fat calves! Various doctors in the surgery prodded and poked my legs and had no idea but one Dr did a bit of research & booked an appointment for me to see a lymphedema specialist at Guys & St Thomas’s Hospital in London.

At the appointment the Consultant said that even though I had pitting he didn’t think I had lymphedema. He said he heard of some research happening at St George’s Hospital in Tooting about a genetic fat problem but personally he didn’t believe in it. When I said that I had problems losing weight he said that he was sure that if I’d been in a concentration camp in the war then I’d have no trouble losing it! How ignorant! How rude! How disrespectful!

I made a formal complaint about him and I did get some sort of apology from the NHS who said that his comments had been taken out of context. Disgraceful is what I call it! Professor Mortimer knew exactly who this man was. Other ladies had encountered him and similar nasty comments had been made to them. I’m sure what sort of person who is supposed to be in the caring & healing community could make those types of remarks, and no doubt worse.

Tuesday, 19 November 2013

Doing "too much"?

How exactly do you know you're 'doing too much'? I'm constantly being warned about this and what does it mean?

It seems rather natural to me that if I can walk or dance, or jump and it doesn't hurt in any way, then it should all be ok....but actually that seems not to be the case.

On sunday, the day before returning to work, and feeling well, painfree and ready to get a little fresh air my lovely husband & I took a drive to our local DIY centre to get something for me to rest my legs on under my desk at work.

We parked a little way away from other cars so I could open the door fully to help me get in and out. So basically I did a 3 min walk to the shop, a 15 min walk around the shop and then back out to the car....

When we got home, feeling well, I sat at the table for a couple of hours doing some crafts. Just sitting, but not with my feet up! This is 'doing too much'!!!

My poor knees swelled like balloons and my right ankle puffed right up. I was really not very happy about it at all. My knees also really ached, especially the left one. I was cross with myself for 'doing too much' but also because it didn't seem that much to do. I'm not sure if it was the walk or the sitting part.

So I am back to work, walking from the car park which takes just a couple of minutes with my feet up nearly all day.My ankles and knees are just fine. But my backside really aches!!

Saturday, 16 November 2013

Sorry I've not written....

Wow, I can't believe I haven't added anything to my blog in just under a week! How dreadful! But I'm pleased to say it's not because I've been in any particular pain, just time slipping through my fingers and maybe thinking I had nothing to report.

I have had 2 sessions of MLD this week which actually wasn't as painful as I thought it was going to be. Lucinda, my therapist was extremely gentle the first time but I felt I had two proper sessions this week & it's really help. Lucinda was very concerned that my legs were angry looking at the front and there was some damage to the skin. Also there seemed to be alot of heat coming from that front lower shin area. I contacted the Professor who said everything looked normal given what my legs had been through! The massage seemed to relieve the pressure a little too, which can only be a good thing!

I started to feel much more myself this week, which is a sure sign of getting better. That general fogginess & tiredness has lifted. I've managed to get my hair washed over the bath and have a shower from the shower attachment rather than in our normal shower. Small baby steps but massive amounts of independence going on here!

Yesterday (Friday) I managed to drive my car & also walk a little in our local town, which was great. To be out of the house has been amazing! It's such an annoyance that someone has managed to scrape my car whilst parked outside my house. Luckily she owned up to it and the damage isn't too bad. But I opened the door with a blanket wrapped around me as my stockings were drying...I can't imagine what she thought initially! I also managed to cook a meal. The only issues I have had is that my legs are aching when I don't have them elevated. Yesterday was the first day I've had my legs down for most of the day.

And today I'm back at the computer answering 147 emails to help my return to work on monday!

Here are my legs upon returning to the UK on Thursday 7th Nov

And here they are today 16th Nov
The skin looks sore still but it's not so bad. The skin is retracting and I guess I may have a little sagginess at the end, but it's already looking alot better than I ever hoped. Still swollen as the Professor said they would be for a little while, but I'm getting there!

I do have some lovely gory pics to show you but I need to scan those in when I get 5 mins at work next week!

take care all! xxx

Sunday, 10 November 2013

Update 10th November

I haven't posted on this blog for a few days now, not because of any great pain but some incredible tiredness & bring emotionally drained. I'm still having problems loading photos to this blog from the tablet but promise to get them up when able to get back on a proper computer.

I'm writing this after a couple of difficult days. I had been felling quite well, much better than I anticipated. The pain is manageable in the extreme & the only real issue I've been having is the constant need to wee. That's a good thing, as it means the fluid is draining away. The annoyance is having to go whilst wearing support stocking! My brain seems to think I'm wetting myself! Ridiculous!

I had spent quite alot of time soul searching, thinking about how lucky I am to have an amazing body which on the whole functions to the highest order. Having spoken fairly recently to others who are in pain with this disorder & having to spend a very short time in a wheelchair I find thst I am valuing my mobility even more. Also thinking of what could of been if I hadn't taken control when I did of my diet, exercise & massage almost leaves me close to tears. Would I have hone from stage 2 to stage 3?

My poor husband has had to cope with all my ramblings & emotional moments. He's been absolutely amazing. He has fetched & carried, feed & watered, banagaed & taped me at no thought to himself. The only thing he hasn't been able to do is inject me with Heparin, the anti clotting drug. I've promised him something special when I am back up and running again! Not sure what yet!

I have come to the conclusion that my having fertility treatment when I was 30 must have a link to the progression of my problems. I can't remember the name of the drug I took to stimulate my ovaries but I was producing a dozen eggs a month for over a year. I started treatment at 12.5 stone, finished it at about 14.5 stone but within 3 years I was nearly 20 stones. I take responsibility for some of thd additional weight gain, but I would've needed to be going some to put on 8 stone in 3 years. At the age of 35 I noticed the overhang on my ankles & huge lower legs. It took years to pluck up the courage to go to the Dr's and say 'what's wrong with me?'

Anyway, back to how ive been. As I said, I've been fine apart from the overwhelming tiredness. I've not been sleeping well, getting up to go to the bathroom on average 3 times a night. Yesterday I really needed to wash my hair. I had gotten up leaving my husband asleep in bed and got downstairs, made some breakfast and a cup of tea. All wss good. When he got up we took of the bandages & I had a little walk up and down the hallway. Feeling emotional (again) I suddenly felt as if thousands of needles were been stuck in both my legs. In a fair bit of pain I took 2 paracetamol s & sat myself down. When it passed we climbed the stairs & I got in the shower. I should've been fine, but no more than 30 secs passed and I come over very dizzy and thought I was going to faint! My husband heard me call and got me out and laying me down very quickly. I have a lowish blood pressure & I guess it was a little low. I had a large glass of juice and it took about 2 hours to feel human again! Then the support stockings go on, & the bandages

Later I did feel well enough to go out and get some very (un) sexy orthopedic shoes so I can get about in the wet weather we are having for the next 3 weeks. That's me in the bandages and not necessarily raining for 3 weeks!

The same thing happened in the shower today..not fun, not pleasant & a bit scary! I don't think trying to have a shower is doing too much! I had a shower a day after my surgery, doctors orders, so I must be capable of it! I must be susceptible at the moment to the heat, even though the water isnt that hot! Honest!

Thursday, 7 November 2013

what they forget to tell you...

And you are too busy worrying about having the surgery to ask.....

1. Work out what you are going to wear home from the surgery carefully. A long skirt is better than trousers. Joggers that are loose will be ok. Jeans are an obvious 'no no'! 2. Think about what you are hoing to wear on your feet. If you are going to be banaged on your feet, your regular shoes aren't going to fit! Big slip on mules will be great. I ended up with just socks on & it wasn't great because the ground was wet! I then sat in the cab waiting for an hour for a chance to change them. 3. Think about how you are going to get home or to the airport properly! We arrived by plane & then got on the train. At no point did I even consider that I cocouldn't get back on the train again until the night after the surgery. Which isnt very clever. The clinic had a special rate with the cab co to get us directly back to the airport. 4. Get assistance at the airport on both sides. You will not be able to walk very far or very quickly. I hated being in the wheelchair but there was no way I could walk. People are kind & want to help. Let them! 5. Remember that this is major surgery. Just because you don't have massive cuts with stitches & you didnt go under a general anaesthetic, it still is alot for your body to cope with. You will be tired. Give in to it and rest. 6. You can not do this alone. You need physical & emotional support. Having someone to help you put your stocking s on or help you to the loo is essential. 7. Dont worry about uour diet, that can wait til you are stronger. 8. Be kind to yourself! You will have moments when you get frustrated & annoyed

Wednesday, 6 November 2013

The Op, part 2

Apologies, I am writing this on a tablet!

The Prof carried on working on my legs, asking me to move about a bit. All thd time the lovely nurses were chatting to me & distracting me.All the time the Professor was asking if I was ok, did it hurt. And actually it didn't, not really. I was aware completely what was happening even with the large 'champagne s' that I was given.

After what seemed like forever he moved to the tops of my knees. This was the first time I got a glimpse of the cannula. It is long and quite scary looking. I then said I was in my own version of 'Driller Killer' the horror movie! I tried not to look & the nurses sheiled my eyes. The whole way thtough they chatted, distracting me from what was happening.

Eventually it ended. I was told thst 4 litres of fat had been removed, which is about 10-12lbs in weight. The Prof took a photo of it & then a pic of me smiling on the bed. The nurses got me up & dressed my legs before getting me into compression stockings plus bandages. I then walked up to my room where my husband was going crazy. It was 3.30pm. The operation took 2 hours longer than it should have.

We I got back I was offered soup which I ate like a crazy thing...I was starving! I had a little walk around and was left to relax for a bit. My legs were re-dressed about an hour later, & again about 9pm.

A little blood comes out but mainly it's just fliud which they pumped in.

The Operation itself

I had my operation on Monday 4th November. I can only say what happened to me & how it felt for me. You may find things different with your surgeon.

We arrived in Lubeck after a short journey from the UK. We came via Hamburg Airport, only 70 mins flight from London Heathrow. We arrived the day before & stayed in The Traveller Hotel just 3 doors down from the clinic. The hotel is a fairly basic hotel which is ok for 1 night.

We arrived at the Clinic at 8am as requested & we were shown to our room. My husband was staying with me at the Clinic. After being shown around I was asked to change into a hospital gown & put on some socks & a dressing gown.

At 8.30 am I was walked down to the theatre where I had to put on a small pair of black briefs under the gown and put on a scrub type hair net. I was greeted warmly by the Professor who then asked me to stand on a stool and took photos of my legs, back & front. He re-confirmed what he was going to do, as in take the fat from the bottom of my legs all away & also the fat over the tops of my knees. He explained he felt these were the most important things. He again said that the fat over my knees was difficult as when I sit, it slips away.

He also drew lines in pen over my legs to guide him when he was doing the operation.

One of my nurse s came in and asked me to lay down on my front. Ice packs were placed on my legs and numerous injections were done all down the backs of my legs. These were quite painful. I was told that this was the most painful part of the op. I agree!!

Once my legs were numb needles were inserted under the skin and fluid was pumped in, inflating my legs. It took some time, about an hour, then I was asked to turn over and the whole procedure was done again. Once full I was asked to go to the toilet, not easy when looked and felt like the Michelin Man! I waddled back, my legs not feeling like they belonged to me. When back on the bed they put a little more fluid in. They covered me up put some warm air piping over me and left me for half an hour for the anesthetic to kick right in. I was given a drink & some sugar sweets. Music played or I could have watched some tv.

When the nurses came back in with the Professor I was asked to turn over and the op began for real. Iwas very shaky so they gave me a shot of sometjing which felt like 3 glasses of champagne! I floated off and the work began. He haf cuts in my legs and inserted the cannula. I cohldnt see or feel this at all. I could feel movement under my skin but no psin, just the occasional discomfort.

Saturday, 2 November 2013

Less than 48 hours to surgery

Hello! Here is my final post before packing my bags and flying down to Rio....oh no, that's a completely different film, lol! I should say flying off to Germany tomorrow for my surgery on Monday! Wow! It's almost here. And to be honest, at this moment in time I don't feel stressed about it. No doubt as we walk into the clinic my nerves will be a-jangling and I will be a jibbering wreck.

It's funny, I've had the formal diagnosis for over 2 years now and as soon as I was given Professor Schmeller's name by Professor Mortimer I knew I was going to have this surgery, come hell or high water. I didn't care how I got the money together, it was going to happen. At that point in time, I hated my legs. I couldn't bear them to be looked at or touched. I wore maxi skirts or jeans, covering them up as much as possible. But over the last 2 years I've actually grown to love my legs, yes, I actually do love them. It's the evil fat I hate!!

My legs have carried me around for the last 45 years, up hill and down dale (not so much of that but you get the drift). They carried me when I was a shade under 23 stone and now I'm a svelte 13 stone. They may not be pretty but they run, they jump and they can dance and skip even though I have the evil fat clinging on for dear life.

Never more has this been brought home to me than this week I 'met' a lady on Facebook called Lilith Nix who has lipoedema. I am at one end of the spectrum, she is at the other end. I can do things, but prior to her very recent surgery, she couldn't walk. How awful is that. I feel terrible just saying that, but it must be so terrible to just have this disorder where everyone just thinks you're fat but actually you'd give everything to just be able to get about like regular people. This is how disabled people must feel daily.

I thought for the most part that lipoedema effected the sufferers mental health...the looks from people who just think you're fat, children pointing and saying 'what's wrong with your legs?' but I didn't reaaly think it could be disabling. For a little time this week I even felt guilty about having the surgery because my issues are minimal in comparrison with others. But I asked myself why should I not have the chance too to be normal. I play things down and say it's all about the boot fetish, but for me, I just want to be normal.

Oh, and one final thing about going to have surgery in another country....you need to get a blood test to send to them. Who knew that could be so difficult!?

I rang the Dr's surgery and said that I needed a private blood test for a private surgery and could I come in and have it done. And of course, I fully expected to pay. They say, oh no, you have to go to a private hospital to get that done. You need to call and make an appointment with them. Ok, so I ring up my local Nuffield Hospital. ME:'Hello, I'd like to have a blood test for a private overseas operation I'm having', THEM: 'oh, you need to go to your Dr's get a referral from them' ME: 'Oh, well they've just told me to call you' THEM: 'Oh, well we can do it but they have to request it, even if it's just for you' ME: 'But I know exactly what bits I need to know. I can't get an appointment for a week' THEM: 'Oh no, but it has to be a referral from them, and then you can come here and then we'll release the details back to them because we can't give the results directly to you' ME: 'Even though I'm paying' THEM: 'Yes. We can send your results directly to your surgeon if he sends a referral to us' ME: 'He's way to busy for this...how much is the test by the way' THEM:'£275' ME: '....(nothing said but thinking JESUS!)..ok...I'll ring you back when I get the referral'. I rang the Dr's and said...'ive just rang Nuffield because you told me to and they said I need a referral from you'. THEM: Oh yes, we know, but you still needed to ring them' AGGGGHHHHHHHHH

Yes, it is that difficult! In the end my Dr said he'd do it for free because I'm never there!

So I will post back here when I can. I will take lots of photos, good or bad and try to be as honest as I can.

Wish me well and have all your Gods smiling and shining on me for all the good luck