As a child, I was sporty, did a lot of Highland dancing and did suffer growing pains for a time. As a teenager, I went to the nearest academy, but at 12 or 13, I was off school for around three months because I was not feeling well (I did have an accompanying raised temperature). Eventually there was no diagnosis, so I went back to school. I was married just after my 20th birthday, and just after my 21st birthday, I had my first child, a girl. Fluid problems, complications and depression dogged me throughout. My weight gain was difficult to shift and I entered the arena of yo-yo dieting. Having previously had a 35” bust/23” waist/36” hip measurement, I was very concerned about my weight, especially when friends were quickly seeing a downward trend on their scales and I was diligent but not losing the pounds.
Following the births of my three children, I put on loads of weight with the second (a boy), but lost weight late pregnancy (a girl). Thereafter, the difficulties of keeping my weight down were insurmountable. Having gone from 7.5 stone before having children, by mid-forties I’d gone beyond and reduced to 10 stone. I’d gone through a lot of stressful times, including divorce, a few relationships and was a single parent when I met my second husband. Within a short time, perhaps five months, relaxed and happy (read: eating and drinking), I’d gained two stone! The real difficulties came in the menopausal years, which were hell with my weight gains continuing to about 14.5 stone at age 63, mainly caused by the three years heading towards knee surgery.
Following surgery, I returned to my activities of walking, swimming, bike riding and dieting, during which time I lost over 40lbs, weighing in at 12 stone. Then, for some reason, I got stuck! Although I kept up exercising as much as I could, I lost the battle with weight loss and currently struggle to remain below 200 lbs. I have dietary exclusions, including groups of foods. My intake is around 1,500 calories per day (output 2,000–2,500 calories). I have a few medical problems, a lot of pain and sometimes medication which causes weight gain, but I struggle to do as much as I can.
Finding out I had Lipoedema At around 73, and following a long time of movement, exercise and dieting, I’d been suffering from sore legs and arms with bruising, plus burning bits all over my body which I put down to my arthritis. During one of my 32-mile charity bike rides, my bike and I had to give up due to my pain, and I hobbled out of the halfway marquee, accompanied by my husband and the car; a sad way for my bike to be taken home. Following a night, when my body felt as if it was on fire, my doc saw me, touched me in various places which made me yell, and said, “You’ve got Lipoedema!” I was delighted there was a reason but horrified by the details of this monstrous fatty disease.
My doctor contacted our NHS Trust and fought for me to be seen in an appropriate(ish) clinic, but lost the battle. I had a second doctor fighting for me too, and she eventually put together a representative from Medi, a District Nurse, and me. As a team, we learned how to measure and my first pair of compression tights finally arrived. However, while waiting for the right tights, I’ve experienced many rubbish tights that don’t fit (which I bought online) – walking hanging on to my ‘slip, sliding away’ tights and occasionally losing balance was not a pretty picture. I permanently use a stick to save falling due to lippy balance loss.
I now have correctly fitted tights from Medi, and these are supposed to be measured for and delivered every six months. Sadly, although my wonderful doctors set up everything, it takes many weeks to get to the measuring point, and with delays it’s easy to chalk up an 18-month gap between the measuring and wearing, by which time for most people, they have grown again! Soul destroying.
I’ve had battles with consultants when they have no idea of what Lipoedema is, and therefore no understanding of my struggle and self-help. It seems they have absolutely no idea of the damage they do telling a person of my age (77) and a lifetime depressive to lose weight, not once but four times during one visit. I did send a complaint letter to Mr X because he said he knew about Lipoedema, wouldn’t take my leaflet and wouldn’t listen to info from me. He proceeded to hurt me during the examination and did offer to send me somewhere else with a view to having a lumbar op, but being told to lose weight, yet again, I left his surgery pushing back my tears and muttering ‘I’d think about it’, desperately needing to say ‘yes’. I felt so bad, I was howling in the car and now struggling so much to stand for more than five minutes that I wish I’d been less upset and accepted his offer. In his report called my Lipoedema ‘lymphoedema’, and when I complained to him personally, he blamed that on a secretarial typo. I did receive an apology. I soldier on.
How does it affect me?
Lipoedema affects me mentally as I still can’t quite accept it and need to be vigilant and honest about my state of depression. Physically, it affects me because I have arthritis and spinal problems – I never know how ill I’m going to feel on a daily basis, and finally sleep is difficult. Socially I’m affected because I can’t make plans with such an unreliable disease which, for me, includes fibromyalgia plus some medication ruins sleep.
Mobility is a huge problem. I had a very bad dose of Covid first time around about 20 months ago, during which time I had four or five treatments of steroids for cough and chest complications and the respiratory consultant felt Lipoedema was causing problems of lung pressure when lying on my back. I ended up with inflamed lungs and it’s unknown whether this will worsen or disappear. I had a second dose of Covid in December 23, which I thought initially was fibromyalgia but tested positive for COVID-19. It wasn’t fun but had little or no detrimental impact on my already compromised state of health, thankfully. In the end, losing balance, shortness of breath, pain and weakness meant I had to sell my bikes. I was devastated but a friend was not going to let me drown in my tears and directed (shoved) me towards a wee dog. This was then best bit of bullying I ever had, and I now have a purpose to get up and out with Minzkii my therapet Shih-tzu. We’re slow but steady – mostly. Travelling is out, not only because of the difficulties already mentioned but also because I need to take a trunk full of food regarding dietary requirements.
Moving on
I am trying very hard to accept my lot but I don’t know if I can. If my pain was taken away with a back op, I might find my world opens up. As I’ve slipped into shopping online and rarely get to the larger shops, I’m taking that as a positive and have started buying candle-making stuff and, with a couple of friends, we produced our first efforts. Sadly, they leave plenty of room for improvement. But that could be a good thing as it will come with much more laughter.
I’m telling myself that the ‘hot and painful body thing’ has to be tolerated, but the medication, although it has helped, has bad side effects, making planning and me very unreliable, which for someone who likes to meet deadlines is difficult. I must be careful not to shut out what is available.
My advice if you have Lipoedema
* Stay positive. Shut nothing out. When you are feeling bad, stop, give yourself care and understand changes have to be made.
* Find happy and easy things to pick up – reading, colouring, knitting, hosting coffee (where friends will do the work) – or try a new hobby. I took up piano because my arthritic fingers were very painful.
* Eat well and avoid inflammatory foods. I thought I’d done it all until I researched inflammatory foods and discovered I still had some in my extensive food lists. Now gone from my diet – even more reduced pain. In fact, it could be said that my Lipoedema pain is gone most days.
* Find support from anywhere and take it!
* One of my biggest struggles is mental. I work on that with the techniques I have acquired but help should be available if you try to find it.
* Wear your tights every day. Yes, even on the hottest days. They aren’t like thick, thermal tights; they do allow some air movement. I have a love/hate relationship with mine but, luckily, when I have a new pair, which I’m always convinced would only fit one of my grandkids, my husband helps me pull them on. Don’t leave your windows open if you’re doing this, the sounds can be noisy and misleading.
* Brushing! My trusty, inexpensive, round, bristly brush is my morning and evening friend. I went through ‘jumpy’ or ‘restless’ legs for years prior to my diagnosis, and the sheer magic of nightly brushing assisted my compromised lymph system and my Restless Legs Syndrome was no longer a problem. Once you’ve improved your situation, the brushing doesn’t take long, nor does it need to be done daily, only when needed. That’s my experience – yours could be different, but give things time to work. Be patient.
* Get in early for diagnosis – cry, whine and push, and if you can find someone to do it, then start as many supportive habits as you possibly can. The sooner you start, the sooner you will find some for your particular needs. For example, MLD (which is not cheap but works on your lymph system), swimming, even walking in water. I try for three times weekly at the pool (once I’ve built up my courage to be seen), but at the moment I can’t manage that. I will soon.
* Be assertive with the medics you meet. Garner information, write down keywords, then go forth and educate, I say! You know what you’re suffering, you know the info and you know the NHS is trailing miles behind you for now, but it’s making sounds about catching up. It can’t come soon enough!
* In the early days, when I felt alone and scared, I relied on Facebook pages and the internet. Today, my bank of information, hope and learning about my condition and the current research is from Lipoedema UK, now part of a global consortium. Many other groups are out there but I feel safe in the hands of Lipoedema UK and take great delight in organising small fundraising events.
