Finding fulfillment after Cushing’s forced me to change careers

Cushing’s Syndrome truly changed me and my lifestyle. Battling with horrendous symptoms and feeling I was dying from the inside, when finally diagnosed and having had an adrenalectomy a new journey began for me. I’d been professionally trained in ballet. I’d worked in a special needs school, where I carried out managing school resources and delivering the occupational therapy programmes to the pupils. I was always at the local aerobics classes, a very fit and able person, loved gardening and house diy walking my 2 spaniels. Raised 2 kids and worked hard. Osteoarthritis hit me at 41, I then went downhill fast. Spinal issues led to loss in mobility and chronic pain began. Late 50s my symptoms began, first hot sweats was treated for menopause! Fragile bones and tendons, weight gain looking full term pregnant, I was a petite size 8/10 at 5 ft 1”. Buffalo hump, hair falling out, extremely emotional no control over them, awake 48 hours at a time. High blood pressure, depressed became housebound, unsociable, worse thing my skin was like wet tissue paper I had to wear stretch bandage as sleeve to protect my arms from the slightest touch, even from brushing against a pillow my skin tore back and bled leaving scars. The shower took skin away from my chest area. I didn’t look in a mirror over three years, it wasn’t me. Bruises daily appeared like raised purple wine red bumps that would burst with blood like blisters, some of them huge. My arms were worse. A plaster would take chunks of skin off when removed. I cried when I was first seen finally but my endo and tests began the very next morning, 6 weeks later I was in London Kings for surgery. The nodule was very much an active growing tumour over producing cortisol. Although Scans had picked up the adrenal tumour three years earlier in 2 separate scans, looking for reasons I was always anaemic…. but was twice reported as just a fatty lump stating that No further treatment was required. Still no reason about the anaemia today! And so I continued to get sicker feeling suicidal at times. Following surgery, within a week 8 coukd see the holes in my ears to put my own earrings in. A little weight came off over the next year, but I still had the Cush8ngs belly, three years post op. But over the past 9 months I’ve gone from 67 kgs now 52 kgs, back to a size U.K. 10, and flat belly. Skin good hair returned . It wasn’t an easy recovery tapering the hydrocortisone I wa now on. It’s been 3 and a half years now and my remaining adrenal gland that gave up and went to sleep I’m told is not going to recover and so I’ll be steroid dependent for life, 6 hourly doses to function. So from one rare condition to another, Addisons, Adrenal Insufficiency. Now for the positive things. I couldn’t work for several years prior to Cushings ( by the way they believe I’d have Cushings going on 8 years or more to have reached the degree of symptoms I was at and the damage caused to both muscle loss and low bone density- now osteoporosis and muscle weakness. High cortisol was masking fibromyalgia this came to light when after surgery cortisol levels reduced and my God did I go into a flare up of pain. I have spinal stenosis and sclerosis and scoliosis and the degenerative discs so I decided in my recovery to help, help myself heal. From my love of gardening - which I could no longer do, I discovered herbalism and then grew my own healing plants and herbs from seed. i did an online course which I got a distinction in, I then did a course in aromatherapy and was soon making my own natural healing products. From salves, infused herbal oils made from my own plants, and other products this gave me such an inner calmness and a sense of purpose, word got around and I have requests for my beautiful 100% products from friends family and local community. I began making products mostly aiming at reducing pain soothing the symptoms. But now I also make natural beauty skin care products and self care items. I’ve discovered also how rest listening to your body, learning your new limitations and most of all acceptance, all make a difference. accepting the changes and adapting to them is so important, but one of the hardest things to do, I knew I’d never be the person I was, but by adjusting to the new me finding other activities and ways I could feel worthy would give me the hope I need for a better future. I’ve sewn for many years and today I continue to sew but only making small embroidered items and mostly memory bears ( made from clothing). I meditate a little and have recently taken up self reflexology, I’m so enjoying this course and learning another natural healing method, and that I’m able to use my own herbal infused oils for maximum benefits. I take each day as it comes, I live with chronic pain, must limit what I do. Walking is painful, and difficult and very limited. On bad days I’ll return to bed, with heat therapy after I’ve carried out my daily stretches and reflexology, embracing the plants natural healing properties to help ease my pain away, I’ll do simple mind focusing activities like reading, researching online herbalism looking for beneficial recipes and give my aching body the rest it’s asking for. I benefit much from applying heat after I’ve stretched and massages in herbal oils with the heat from hot water bottles and heated lavender wheat pillows. Sorry for writing a mini essay here where it should have only been a comment. But I wanted to share a bit of my story, my journey with Cushings. I hope someone gets the chance to read this, and find some hope and inspiration from my words. I take far more care of myself today, and that’s a good thing, especially that I’m now aged mid 60s. I am a sun worshiper and when ever I can will be out on my sunny patio. The U.K. winters are long dark and grey, so to help me through this years winter I’ve decided to give adult colouring a try ( hoping to keeps my hands mobile) and brush up on my Spanish. Although I have a little treat in hand too….. I’m finally going to New Zealand for 6 weeks to meet my new Granddaughter who is 5 next month, we’ve only met on face time. It’s going to be magical. I broke my ankle the week she was born, ( brittle bone) not then diagnosed with Cushings, then five months later was diagnosed and having surgery, then Covid was around us, all this then my recovery from surgery in 2021 all prevented my making the long trip. Determination and will has made me book and prepare for this trip, I’ll never make the trip in a chair on such long flights so I’ve booked Business Class so I’ll have lie flat beds to sleep away the flights. I’ve booked for airport services assistance from plane to plane through all airports. I booked this trip in May, saying it’s now or never having then being diagnosed with soft connective tissue decease, both Dupuytrens and Ledderhose!!!! and so now I’m getting prepared for the once in a life time journey where I’m going to have the most magical trip of my life. I haven’t seen my son for 8 years so it’s going to be truly wonderful. It will be the first time my husband of 47 years and I have been apart, but we will be face timing daily. three years ago, I would never have dreamed about making this trip, and I feel so proud of myself that with my difficulties pain, limited mobility and anxiety, I am doing it very soon and going alone with a little help of course from airport staff. It will be strange leaving here late December, our winter, and having Christmas in what will be their mid summer, will make my UK winter shorter, what a wonderful thought that is…..Thanks to anyone reading my story, of course I’ve only just touched on the surface of it all, there’s so much to tell that at one time during my recovery I was thinking of writing a book on recording my journey as it had been so long since I’d become unwell, and I’d love so much to spread the word of what this cruel life changing condition can do to a person, and being a rare condition, theres still very little knowledge on the matter, especially the psychological effects it has too. It took so long to get diagnosed. Before being diagnosed, while I was in a very sad place of mind, together with my test results and google research I actually self diagnosed myself, 7 months before I saw an endocrinologist. The changes and demands after surgery, accepting the changes and finding the new you can be overwhelming.
I’m sending best wishes and hope to you all who have access to my words, and pray that each of you find your own way to peace on this journey that you’ve found yourself on at what ever stage you are at. Most of all, look after yourself, be kind to yourself, be patient, it takes time, and take plenty of “ME TIME” you’re worth it. I wrote here on this comment space as a way, of hoping that I could perhaps offer some inspiration on the subject of Cushings, as I really do know how this decease can make you feel so worthless, sad and confused, and that there really is a better future just ahead.