Tess - "My story"...
My given name is Teresa – now married to Robert-Michael Sanderson who some of you will have met as he follows (or drives me) around, helping out at different Lipoedema events. However, most people call me Tess nowadays.
"This is a long one, as I am at Stage 4, Type 4, Lipoedema and am now in my 60th year. (How did that happen?) So, settle in and get comfortable!..
My story starts around age 6 or 7. In the space of 6 months I changed from an elfin-looking little girl to a little round blob. The shocking change in me shows in 2 photographs my grandmother gave me, with the dates on the reverse – June 1969 and January 1970. Now the only thing to happen in that time was that my sister was born – and I can't really blame her for the change in me!
The first changes of puberty started around that time too, breasts forming etc. My mum had to get adult clothes and have them altered in order for them to fit. I was quite active – always out and about playing and cycling – our estate was a safe and fun community where most people knew each other. I also loved reading, writing and drawing. However, the teasing and remarks started at aged 8 at Junior School, (even from family) accompanied by bullying that lasted till my late teens. I didn't eat any differently to my siblings, I wasn't lazy – yet here I was, with big tree trunk legs (compared to my friends with spindly legs in white socks) and clearly not worthy to be around.
I do remember my mum's legs getting bigger when she had my younger brother, but she died at 44, so I have no idea if she had it, or would have developed it. My siblings are unaffected and I also got the freckles and spectacles too!
At 16 my mum died. I was the slimmest I had ever been, a 14 top and an 18 bottom. However, I believe the trauma of her death did contribute to a small acceleration of the lipoedema. This lasted around a year. However, I put weight on everywhere, as I also consoled myself about my horrid legs and the loss of my mother, through food. I did lose 5 stone aged 19, but my legs did not change. At the same time, I had labyrinthitis, which left me with residual vertigo and I didn't walk for some months (had the feeling of motion sickness every time I sat up). I also had issues with bites on my legs, leaving huge boils and painful scars. After investigation at hospital, I was told I just had fat legs, to cover them up and keep out of grass.
So, I started to wear trousers, long skirts and dresses as much as possible. I walked up to 10 miles a day to and from work and to visit my sister and her new baby, did exercise at lunch time (aerobics, feeling the burn and ruining my knees and also yoga) and I also used to swim or do aquacise up to three times a week – and long country walks or dancing most weekends. Despite this, I could not lose weight. Once married I lived too far away to walk in to work and the weight started to come on.
I then had two accidents at age 29, one that broke my coccyx, leaving me with permanent back pain and another that permanently injured my shoulder – it was at this time my legs grew crazily. The back pain was awful and my shoulder injury resulted in paralysis of my arm – I still do not have full use of my left arm. Again, I was told the reason it hurt was just because I was fat and lazy, that I was lying about my food intake and could not be helped.
My weight ballooned, I was in so much pain everywhere, I was bruised and felt embarrassed and ashamed. Unknown to me, I also started an early menopause around age 35 – this had devastating effects not only on the lipoedema worsening, but on my behaviour and mental health. I felt I was going mad. I felt and acted like a different person and my relationships were affected hugely, with my first marriage breaking down. This was more trauma for my battered body to deal with. My mobility really suffered from around age 40 and reluctantly in my early 40's, I had to start using a walking stick. There was no help for me regarding my 'women's problems' and I spent 12 years going through this until my 2nd husband marched in to the doctors with me. After blood tests (previously refused several times as I was too young and it was all in my mind) I was pronounced as post-menopausal, aged just 47.
As my legs exploded further, I was made redundant from my full-time job as a civil servant; a position I had held for 28 years. In the last of those years I was Leadership, Graduate & Study Support Manager, which included running 9 Learning Resource Centres across England. The redundancy had a devastating impact on our financial situation and later meant we had to give up owning our own home.
I found an amazing MLD therapist who could not treat me because of the wound, but out of the kindness of her heart, researched new type dressings and helped me get them from the NHS. Eventually, I had a meltdown at my GP Surgery about the lack of understanding and the unhealed wound and was referred to the Wound Care Service – who had taken over the lymphoedema provision that month. I was super lucky to be seen by a male nurse (believe me I was not too happy about that, no one but my husband and foster daughter had seen my legs for at least 10 years) – it turned out to be a blessing! Andy knew about lipoedema and recognised that I had it.
He cured my wound in a WEEK. Yes, a week. I had been struggling having to dress it alone with my family for three years at that point. Over the next 3 months, after bandaging he got me in to compression, though it took another 2+ years to find the right fit, I was determined to wear them, to protect my legs and enable me to move more. With his encouragement, I lost a little weight (by going back to eating more natural, less inflammatory foods. I also rejected the diet foods I had been eating for 30 years)
I learnt so much from both experiences, but still felt there was more I could do; there was something I needed to do to make a difference. During the years 2012-2016, I managed to lose about 4-5 stone but then plateaued. In 2015, I attended the Lipoedema UK Conference in Reading and took part in the Lymphatic Yoga session with Edely Wallace.
It reminded me of how I used to love yoga in my twenties – but of course, now I could not get on the floor and my legs were so large there were no pretzel shapes for me! But I could do these exercises seated. It made me feel good. I also finally got measurements for my legs via Christine Wise, who was then one of the Nurse Consultants who volunteered for the Charity. At last, I got stockings that fitted and did the job. I still wear those recommended ones to this day.
I returned to the Conference event in 2016 and was so impressed with the work being done. Work that would make a difference to treatment and to the education of healthcare professionals for the future. This was something I really believed in. I didn't want my experiences to be repeated by younger women. There was so much that should have been different for me and would have been had I been diagnosed when I was younger.
Fast forward to early 2017. I cannot even remember the reason now but Sharie emailed me about something and we got chatting via email and I was invited to go down to the London meeting with the volunteer team and Trustees. From there, I began to help out the team and was involved in helping out with the 2017 Conference and took over responsibility for Social Media – mostly Facebook and Twitter. During this time, in my effort to find some type of exercise I could do with all my issues (I have arthritis in my knees and shoulders now too and fibromyalgia) I came across Laughter Yoga. I remembered how good Edely's lymphatic yoga made me feel so decided to go off and try it.
Thank goodness I did. After one session, I was intrigued. My Development & Training professional background kicked in... I wanted to know how it worked. So, I paid my money and went off for two days full training, coming out a Certified Laughter Yoga Leader. At the 2017 Conference I demonstrated Laughter Yoga with a single 40-minute session – at that point I was just doing it for me and sharing it with others. But from there I realised I should at least try and make it my business. So, In the Laughter Locker – Find Your Happy was born in 2018.
At the 2018 Conference I had two packed sessions of not just ladies, but husbands and family too, participating in Laughter Yoga and feeling the benefits. I believe we were a bit too noisy during the laughter element, so we were moved to the larger room on the second day – just as well, as there were around 30 people there! As I have taken more and more sessions something else happened. My mood changed, my sleep got better, my optimism grew – and amazingly I have lost just over 2 stone between July 2018 and September 2020. My eating habits are the same, I have just done more laughter and movement. Anything that can help me keep what mobility I do have is a blessing indeed and bringing happiness to others whilst I do it is a joy.
But there is always hope, there is always the chance to be involved in the change to a different kind of diagnosis and treatment for Lipoedema Patients. To have something in place to properly support late stage sufferers and those who no longer have their mobility.
For me, I would love legs that were fully functional. Look is no longer important to me – they have been like this for 50 years, looks are just a bi-product of surgery. To be able to buy clothes without worrying how my hips, upper arms and legs will fit in. To have a pair of boots – oh a pair of knee-high boots is a dream! But I manage with what I have and I am happy. To be anything else would be such a waste.
Who knows – if we carry on campaigning and getting heard, we will have a new world out there for our younger sufferers. And at the end of the day, what could be better than that?"
Tess x
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