IT’S NOT (all) YOUR FAULT

On Friday, 26 February 2021, I received my diagnosis – I have Lipoedema. I had a comparatively stress free journey from hearing about Lipoedema (Lipedema in the USA) for the first time in September 2020 to getting a diagnosis from a consultant rheumatologist, just six months later. Many women (and men, who can have the condition but it is a exceptionally rare) have to battle for years to get a diagnosis and the treatment*, support and understanding that hopefully comes with it.

What is Lipoedema? According to the Royal College of General Practitioners:

“Lipoedema is an adipose tissue disorder causing bilateral symmetrical enlargement of the lower and in some cases the upper extremities in women leading to significant disproportion of the waist to hip ratio. Lipoedema is sadly rarely recognised in primary care and hence under-diagnosed. Due to lipoedema being misdiagnosed as obesity or lymphoedema, patients frequently embark on a never-ending cycle of diets and exercise regimes, resulting in further physical and psychological harm.”

The NHS defines Lipoedema in more positive terms, uses plain English and includes photographs of examples:

”Lipoedema is an abnormal build-up of fat in your legs and sometimes arms. It can be painful and affect daily life, but there are things you can do that may help.”

What does a diagnosis mean? In practical terms, it means I can now get some compression garments on prescription from the NHS. Compression garments need to be replaced roughly every six months and are expensive to purchase, even more so if you need them custom made, so access to them on prescription is important. In addition to receiving compression, once the Covid restrictions are lifted and now I have a diagnosis, I will be able to access the services of my local Lymphoedema clinic where specialist nurses share information about skin care, exercise, massage, etc and also facilitate a support group for Lipoedema patients, their family and carers.

Having the diagnosis on my records also means that I can now ask, with confidence, for the condition to be taken into account when dealing with medical professionals. For example asking for my blood pressure to be taken at my wrist rather than my upper arm, which is extremely painful (and is something that I had always thought was normal) or consideration rather than irritation being given to the pain procedures like scans of my legs can cause.

In January 2015 I wrote a post called ‘I wish…’ where I wondered if I hadn’t been sent to a dietician at the age of six or so, if I wouldn’t have started down the path of endless diets and ended up fatter than ever. Now I know I have Lipoedema, that it is hereditary and that the little girl in the photo below that I used in that post probably already had the beginnings of it I feel…sad, I guess. Sad that she was made to feel that she was overweight when the likelihood was that her Body Mass Index (BMI) was probably squewed due to abnormal fat cells. Sad that being classed as fat meant that she felt embarrassed and excluded. Sad that this was the beginning of forty years of feeling less than.

The negative feelings that I developed over the years with regards my self image – both the physical and mental – led to an equally negative relationship with food. I would use food to cheer myself up, to celebrate, to distract myself, basically any opportunity was an excuse to eat. Later on I added alcohol in to the mix. This all added weight to my already Lipedema heavy body. Obviously I accept that I ate and drank all those extra pounds, no one held a gun to my head, but finding out that my constant weight issues have nothing to do with my lack of will power and/or my lack of character has been liberating!

Another positive outcome from getting my diagnosis is that I can share the diagnosis with my family. It is believed that Lipoedema is an inheritable condition. Looking back, I think my maternal grandmother had Lipo-Lymphoedema (where the Lipoedema fat causes restrictions in the lymph system resulting in a build up of fluid called Lymphoedema) in her legs and Lipoedema in her arms.

My lovely Nanny (and probably a cousin!)

I also suspect that several other family members are showing early signs or already have at least stage one Lipoedema. Early diagnosis is key with Lipoedema as not only can the individual undertake practices to help delay onset, slow and hopefully halt progression of the condition, they can avoid falling into the trap of believing their weight challenges are due to their own failings.

Images of different stages of Lipoedema.
Used with the kind permission from Lipedema Foundation

Knowing I have Lipoedema will not reduce the pain and physical difficulties it can cause but it can help me to accept the condition is out of my hands, help me to focus on positive practices to manage the condition and help me to learn how to love my body for all it does for me in spite of its challenges.

*when I talk about treatment, I am talking about nonsurgical options. I personally don’t want to have surgery as the thought terrifies me and so I won’t cover this. There are many other people who discuss the topic of Lipoedema and Liposuction and I would suggest searching the following hashtags if you want to find out more #lipoedemaliposuction #lipedemaliposuction

June is Lipoedema Awareness Month. I will be writing and sharing more about Lipoedema over the month as well as taking part in the Talk Lipoedema Walk In My Shoes Fundraising Challenge – I have pledged to walk 66 miles!

If you’d like to sponsor me, you can do so by using the following text codes from your phone 70085

• To donate £5 text WALKINMYSHOES 5
• To donate £10 text WALKINMYSHOES 10
• To donate £20 text WALKINMYSHOES 20

or go to the Givey Donate site and find WALKINMYSHOES2021CHALLENGE

https://www.givey.com/walkinmyshoes2021challenge

LOCKDOWN LIFESAVER – how Lockdown v1.0 and a blood clot saved my life!

2020 was a year none of us will forget. The world will be reeling from the loss of life, livelihoods and almost anything “normal” for years to come but, in amongst all that sadness, little flashes of kindness, inspiration and joy sparkle like stars on a clear summers night, bringing fresh hope to us all.

As a family, we were obviously affected by the pandemic. Both children were at important stages of their academic journeys, the girl child was due to take her GCSEs and the boy child his SATs, and Mr F had to adapt the services he provided through our businesses. Along with countless others, our holidays and family get togethers were rescheduled and we all tried to embrace the silver linings that the enforced slower pace of life brought.

Victory in Europe Day 75th Anniversary ‘Stay at Home’ Street Party

As a Functional Introvert (thank you to Dawn French for introducing me to this excellent description of myself in audible’s Locked Together podcast) lockdown has mostly been a breeze. Obviously I have desperately missed seeing those I love, especially my wonderful Mum; have felt the worry for those who have been ill and, sadly, grieved with friends who’ve lost loved ones but, putting that aside, being told that I HAD to stay at home suited me fine. In fact, enforced lockdown and the subsequent decrease in my activity probably saved, at the very least my quality of life and possibly my actual life too!

Last summer, after weeks of not really walking very far or very often, I decided enough was enough and I was going to get moving. The girl and boy childs wanted to get a Frappuccino from Costa, so I decided to join them on a walk into town. Between my shocking lack of fitness and the extreme heat that day, it turned from a jaunty trot into town into a test of my endurance! My entire body ached and my legs began to swell. I spent the next few days on the sofa with my legs up while my aching muscles eased and the swelling decreased. However, as the rest of my body improved, my lower left leg did not. If anything, it go worse.

On August 31st, after a week of worry about my increasingly swollen and painful left leg, I had a telephone appointment with one of the brilliant doctors at our surgery. She said if I felt there was even a 1% chance that I believed I had a clot, I should go to hospital. Although a bit scary, this was great advice so I took myself off to A&E. A couple of hours and a positive blood test later, I was heading home with anticoagulant tablets and an appointment for a scan on my leg.

Within 24 hours of starting the anticoagulants, the swelling and pain began to reduce. However, as I was able to put more pressure on my leg, the knee started to give way with increasing frequency. I was convinced my knee kept dislocating (I have since been told by my physio that when muscles are underused they weaken quickly and can sometimes “switch off” for a second or two and, in my case, cause the leg to buckle) and started searching the internet to see if it was possible. While looking at images of dislocations and realising I was clearly not suffering from a repeatedly dislocating knee, I saw a photo that looked just like my arms.

Curious, I followed the link and found photos that looked very much like my legs.

The NHS Lipoedema page gives the following description of the condition:

“Lipoedema is an abnormal build-up of fat in your legs and sometimes arms. It can be painful and affect daily life, but there are things you can do that may help.”

I had never heard of Lipoedema (Lipedema in America) but as I read the information on the NHS website and the two charity sites it had links to, Lipoedema UK and Talk Lipoedema, I could not believe it! I was certain that I had this condition and that I’d had it since at least my early teens.

Further research revealed that one of the comorbidities people with Lipoedema often have is hyper mobility, which I had heard of and had gathered a lot of information about prior to getting the blood clot. I had been researching hyper mobility, more specifically Ehlers Danlos Syndrome (EDS), as I believe that the girl child may have it. Both Lipoedema and hyper mobility/EDS fall under the category of connective tissue disorders, hence the link between the two, and are also thought to be hereditary. The more research I did, the more sense I made of my own situation – it was and still is a revelation!

So back to the blood clot – what happened? Thankfully when I had my scan it showed that it had “resolved” and I was able to stop the medication. How did it save my life? Well, without it and that first lockdown, I may never have learnt about Lipoedema, how to manage it, how to (hopefully) stop it progressing and therefore increased my quality of life and reduced the likelihood of loosing my mobility, gaining huge amounts of weight and risking all the negative consequences of being morbidly obese.

I plan on writing more posts about Lipoedema, hyper mobility and my journey to (hopefully) a diagnosis of both, along with lessons I’m learning about how to manage the conditions using exercise, self care and intermittent fasting so make sure to pop back!

FITFARMS: GETTING THERE

Well, I made it! Among the many, many things I felt nervous about embarking on this new adventure, actually getting from my home in Essex to FitFarms in Derbyshire was high up on the list! In the past, such a journey would have been second nature but these days it is totally out of my comfort zone.

However, the walk to the station was so peaceful and calming, I needn’t have worried. I don’t usually get to see Wickford so early, the sun only recently risen and the town bathed in beautiful, soft light. Everything looked fresh and new, perfect for the beginning of my new adventure.

I arrived at the station with time to spare (which is highly unusual!) only to find my train had been cancelled and I had to ‘hot foot’ it over the bridge to catch the replacement bus! After it finished pounding out of my chest, my heart sank at the thought of a long, frustrating bus journey that would make me late. I was really glad that I had paid the extra 90p when booking my ticket to make it an ‘any train’ journey!

As we pulled into Billericay station, the guard jumped on the bus and advised that the train was actually running and, if we wanted to catch it, we had THREE minutes! I was grateful to him as it meant I would be back on schedule but I really could have done without a second mad dash with my suitcase.

When I arrived at Liverpool Street Station, it dawned on me that I was feeling unexpectedly calm! I realised that, as it was still so early and a Sunday morning, the huge crowds I’d been dreading were not there! With a sigh of relief, I continued my journey across London, on the tube, to St Pancras Station.

While on the tube I had a surreal experience. I heard some giggling teens squeal and as I tuned to look down the carriage, I saw a pigeon flying towards me! I’m not a lover of lowing flying birds (they seem to feel the need to ‘share; when near me!), so braced myself for attack and/or target practice. I need not have worried as this dude was a savvy, city pigeon! Although the following video is not my own, this is pretty much what happened!

It was really an odd moment but one that helped me to feel amused and, importantly, to remain calm on my big journey.

The remainder of my journey was pretty uneventful, really what could compare to a tube using pigeon?! I even had time to write a mini blog, which you can read here. I arrived into Matlock station just after lunch, excited, nervous and full of hopeful anticipation!

RUN, MIRIAM, RUN! (Part one)

Just over 10 weeks ago, after an evening that involved too much wine, a lot of emotion and a haircut, I woke up and decided enough was enough! It was time, time for a drastic and life long change!

I have had weight issues for years, which I touched on briefly here, and have been on a hundred different diets with varying success but nothing that I was ever able to maintain.

So, what is different this time? For years I’ve heard the same thing, you have to do it for yourself. I always thought I was but I think a) I was doing it for the approval of others and b) I was doing it because I wanted to look better rather than actually wanting to be fitter and healthier. So this time, it is not about what anyone else thinks or how I look but how I feel – I now really understand about doing it for yourself.

That night ten weeks ago, could have ended very differently. I have struggled with mental health issues since my mid teens. I’ve had very low points before however, that night I really frightened myself. It took every ounce of strength I had not to stop my struggle. I can’t give you details of what I did to stop myself as, due to the alcohol, I only have flashes of memories but the important thing is I didn’t end it all and it turns out that life really begins at 41 and a bit!

I woke up the next day and my new life began. I decided I needed to loose weight and get fitter, not for the approval of others or to look more socially acceptable but to save me from myself.

Morning after the night before

After my self styled hair cut had been sorted out by my very understanding friend and hairdresser, Jane, I started to make plans. First thing on my to do list was to get back to the gym, taking it at my own pace, two days on, one day off, using the treadmill and recumbent (isn’t that a fabulous word?!) cycle.

While all this was going on I was looking for somewhere I could go to give my new, fitter lifestyle a real kick start and to get me really motivated and focused. I didn’t want a Bootcamp – who needs people shouting at you and making you feel even more worthless? I didn’t want to be starved as that is just not something I could maintain when I returned home. I wanted somewhere that looked at all of me, body and soul. After googling ‘fitness health farm NHS‘ the first place that came up after the adverts was FitFarms. Why did I add NHS to my search? Well, my thinking was if a place had links with the NHS then it should be reputable.

Google result

When I saw they had also featured on both the BBC and Channel 4, with links to the videos on their website, I felt even more reassured.

FitFarms provide retreat style breaks with the addition of lots of varied exercise, nutritional food, a range of informative workshops, a mentor and three months after care programme.

I found out all the details and how soon I could go, which was a couple of weeks away at the end of June, and spoke to Mr F – if I went away, it would be big financial commitment as well as an organisational challenge for us.

Although Mr F was very supportive of my new, more energetic lifestyle, he obviously knows me very well and raised a couple of valid concerns. His main concern was that I would return from the course initially full of motivation but that as time passed, that would wain or something would happen that prevented me from going to the gym and I would start to feel guilty, to think I had failed again and wasted everyone’s time and all of that would lead to another big depression.

Initially, I took this on board and agreed it was not for me but in my heart of hearts, I knew this was the life line (literally) that would save me. So, I came up with an plan that would hopefully a) prove to Mr F that I was committed to this new life and b) give me something to focus on and aim towards when I got home. So what was the idea? Run a 10k event for Mind, obviously!

Needless to say, Mr F was duly surprised and impressed and supported me and my new plan 100%. Feeling excited and nervous I booked my five night course with FitFarms, bought my train tickets, juggled the children between Mr F and some fab friends and signed up for the Kew Gardens 10K*. A new chapter, a new beginning and I was RUNNING towards it with my mind and heart open to all the new possibilities!

*If you would like to sponsor me you can by visiting http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=MoreMiriam&faId=624097&isTeam=false

I’M SWEATY AND I KNOW IT!

Oh my WOW! I experienced a first today at FitFarms that made me stop mid kick boxing and cry out! The whole class, Trainers and my fellow Clients alike, stopped full of concern. What happened? Well, for the first time ever, I sweated SO much that it rolled down my forehead and into my eye! I was so confused at this alien experience, then shocked when I realised what was going on and finally, and rather strangely, elated!

When I explained to the group, they all gave me a cheer and a round of applause – they are such a lovely, supportive lot!

I was so amazed that, once we finished the set we were working on, I had to take a selfie which was immediately photobombed!

(I’m planning on writing more posts about my FitFarm adventure, so do pop back!)

RUNAWAY

Today, aged 41 and a 1/4, I ran away from home! Suitcase carefully packed, lunch made, and with a spring in my step I practically skipped up the road.

The last time I ran away, aged approximately 6 and 1/2, it was a different story! Suitcase stuffed with random, fistfuls of socks and pants, nothing to eat or drink I dripped, yes dripped, my angry little self down The Dip to the bus stop. I can’t remember the exact details but they included me getting up from the Sunday lunch table, hand on hip and telling my Mother “You wouldn’t dare!” as she threatened, initially as a joke, to pour her glass of water over me. Needless to say, even the might of a 6 and a 1/2 year old’s fury cannot match the power of The Mother One!

I had no plan. I was going! Leaving my horrible, smelly family FOREVER!! Luckily for me, my family quite liked their 6 and a 1/2 year old so they gave me ten minutes to calm down, then came and took me home. Luckily for them, the Sunday bus service was shocking!

Today, I have a plan! My family is not horrible or smelly, well most of the time! I am not, in fact, running away. I am running towards…

…towards a healthier, happier me!

Let the adventure begin!

#ThisGirlCan

Yesterday was momentous! To say I feel proud of myself is an understatement! Why am I feeling this way? Well…I ran! Yup! That’s right…Mrs F, Mum, Miriam, me… R.A.N!

No, there was no fire, no children in peril, no monster chasing me. I chose to run, not Olympic speeds (yet), but far from the nervous, self conscious shuffle that I am known for on the school run!

I chose to run the last six, one minute intervals of my 45min power walk. I gripped the supporting bars like my life depended on it and went for it!

#ThisGirlCan #whoopwhoop

I WISH…

I saw this on facebook this week and it got me thinking… I’ve always been ‘the fat one’, I can’t remember a time when I didn’t feel fat and felt that people saw me as fat and judged me for it.

Don’t get me wrong, I know I am fat. I know I eat too much and do too little but I also feel that a major factor in my steady increase in size is linked to the way I have been viewed by others over the years.

To illustrate this here are a few photos of me:

Me aged about six. I recall being the fat girl in class and having to visit a dietitian about my weight.

Me aged about thirteen on our first ‘proper’ holiday. I felt HUGE.

Me getting ready for my 18th birthday night out. I recall feeling so frumpy and chunky compared to my friends…

Twenty two years on from that photo, I would LOVE to look like that! Maybe, one day, I’ll look like that again…

I NEED A MATINÉE

According to OxfordDictionaries.com, the definition of a matinée is:

An afternoon performance in a theatre or cinema

However, for me, it has two additional and totally different meanings.

The first has been used in my family since I was a child. It refers to the fact that my lovely Mum (funnily enough pictured with me in front of the Gielgud Theatre about to watch the matinée performance of Blythe Spirit staring the fabulous Angela Lansbury) used to sit down to watch the Sunday matinée after cooking us a yummy, if sometimes ‘interesting’, family lunch and five minutes into the film, would fall fast asleep! To add to our amusement, she would wake up five minutes before the end, give the newspaper she had been ‘reading’ a shake and ask what had happened! This happened with such regularity that, if we feel tired during the day, we say we could do with a matinée!

The second meaning is one that, I think, only I use. It is directly linked to the very same matinée films mentioned above. I have such fond memories of childhood Sunday lunches – the whole family together around the table, talking and laughing and critiquing Mum’s latest concoction. And these happy family get togethers were always followed by a matinée and, if we were lucky a box of Milk Tray or Dairy Milk chocolates. Sometimes it would be a glorious Technicolor musical, others a more serious black and white drama. Either way there were, more often than not, tears. Sometimes tears from laughing so much at a funny scene or one of us joining in, tunelessly, to one of the big numbers. Sometimes tears triggered by the moving, often war time based, story. Either way, most weekends I’d have a good old cry or, as I now call it, a matinée.

My life today, while in no way hard, is full of pressures and tensions that the little girl of my childhood could never have imagined. I often get to a point when I know that the best way to move forward is to have a big cry and just let it all go. There really isn’t anything like letting all your emotions flood out of you, the relief and release is truly cathartic. It won’t change the situation or the things I have to deal with but releasing all my emotions and tension helps to face my troubles head on, a stronger and more in control woman.

So, should you need a matinée, be it the need for a good film, a nap or a good cry just do it, you will feel better for it!

IT’S GREAT TO BE BACK!

Today was my first day back volunteering at RHS Hyde Hall and it really was great to be back!

I’ve not been there in my volunteer role since the end of the summer term, although have been a few times (not enough for my liking) in my visitor and parent role during the holidays, and have missed the sense of peace and joy it brings me. Just walking up the hill at the beginning of the day is enough to restore ones equilibrium after a hectic school run!

And so much has changed during those six weeks! The last day I helped out, the last activity we did was bug hunting in the tall, nearly waist high grass on the hill. Today I found the meadow has had its annual ‘trim’ and it was a totally different atmosphere!

It was far quieter – no wind whispering through the grasses and only a few birds singing instead of the choir of crickets. The stillness is not better or worse, just different. And with its new, slicker ‘do’ the meandering pathways appear and treasures are revealed.

Isn’t it a beauty?

And all of this wonder before I’ve even met up with my fellow volunteers and had a catch up!
When I got to the top if the hill, I headed for the volunteers kitchen/break room to sign in and literally gasped with joy when I saw the amazing ivy on the wall. The colours are stunning!

Today, after Charlotte’s introductory talk, we took the children out into the garden to look at all the different kids of rock used in the garden – they are learning about geology at school – and, while we were out , it gave me chance to take a few snaps.

I love the different colours, texture and how the light bounces off the pond…so many things.

So what is my favourite sight this week? It has to be that amazing, ivy clad wall!

If you would like to visit RHS Hyde Hall, then you can find more details here . Or, if you fancy a more hands on role, you can contact the volunteer coordinator Lara here .

More Miriam

Me, my thoughts and the things that make me happy