by Helen McKay
Your doctor was right. There is no cure for lymphoedema, but it can be managed.
I have full-blown lymphoedema in both legs, both arms and abdomen – my lymph system seems to have collapsed and it has to be manually stimulated, to work.
Regardless of this, I have never let it take control of my life. I am a published author, speaker, storyteller and workshop presenter to community groups.
â€œ… helps you gain a positive focusâ€
Â I suggest you ask your doctor for a referral to a specialist Lymphoedema clinic at a hospital. If no clinic of this type exists, ask for a referral to an occupational or physiotherapist. A vascular specialist should be able to suggest an occupational therapist, specialised in managing lymphoedema.
Lymphoedema can be managed with the use of graduated compression garments for either arms or legs – Beiersdorf, a German company, can supply these. They are quite expensive and measurements must be taken, so the correct pressures are built into them. They are custom made and fitted by a qualified physiotherapist, or occupational therapist.
These professional people can also teach you the complex massage therapy, which you and a partner can do to relieve the congestion of the lymph nodes. You may find it helps in the romance department!
It is not like other therapeutic massage, but is a very gentle stroking of the lymph nodes in the groin, armpits neck and skin, to direct the flow of lymph fluid through the lymph nodes and up to the capillaries around the clavicle (collar bone). The lymph fluid passes through the capillaries to the arteries, which then take it to the liver and kidneys, where it is expelled from the body as waste.
I have found that elevating my legs to a higher level than the hips and resting my arms on a pillow at night helps to get rid of fluid, which has built up during the day. It means a few extra trips to the `loo’ at night; but the relief is worth it.
You can elevate the bed on a couple of bricks, or, as I do, use a wedge shaped foam pillow, 8-10 inches higher at the high end. I cover my wedge with a thick towel, which I launder frequently, as the lymph is inclined to leak through the skin at night. The wedge is vacuumed regularly and put out to air in the sunlight.
I find that I cannot bear the weight of blankets on my legs and have hand knitted a mohair throw rug to use, instead of weighty blankets. Commercially made rugs are quite expensive, at around $200. I also use a shorn lambskin to lie on and this prevents problems developing with my back.
â€œ… helps in the romance department!â€
Â Take excellent care of your skin to avoid dryness. Wash with a medicated skin wash and moisturise with a good skin cream. Avoid cuts, splits, abrasions on your heels. A podiatrist can reccommend an ointment to rub onto heels.
Try to avoid scratches when gardening, and bites and stings from insects, to prevent infection, which can complicate your lymphoedema.
Mosquitoes and sandflies are hell for me. Last year I had a wasp sting(s), which reacted badly with the lymphoedema and made the swelling in my arm worse. Use a spray to treat bites and stings immediately they occur.
When sitting, I elevate my legs on an ottoman (or stool), covered by a sheepskin fleece. This sheepskin takes any pressure off my legs and adds comfort.
Do not sit in one place for long periods of time. That can cause other nasty problems such as blood clots. Get up and walk around frequently. Smell the roses!
Standing still for long hours is not advised, as the fluid is affected by gravity, so you may wish to change to a desk job. But walk around every half- hour or so.
It is important though, that you do some exercise to keep your vascular system in good shape. A short brisk walk each day in comfortable walking shoes helps move the lymph fluid round. When shopping, park a distance away from the shops and walk briskly to and from them.
When flying, always wear the pressure garments, which must be in good condition. I chose not to wear my arm garments (vanity) on a recent flight and paid the price, of very painful, swollen arms. Get up and walk around the plane every 20 minutes.
Try to avoid getting overheated. I live in shorts during the day in the summer, which keep my garment- clad legs cool. I wear a very light blouse top over a singlet style top. Cool is the way to go.
I also do some hydrotherapy exercises in a heated pool not far from home and finish with a short swim. The pressure of the water, gently massages my legs. This helps eliminate a lot of fluid. I always have an urgent need to use the toilet when I vacate the pool and when I do, I pass a lot of urine.
â€œ… having a blue dayâ€
Â I think a positive attitude is essential to dealing with this life challenge.
Keep a Happy Book (pretty notebook), in which you regularly write the things that made you happy, that day. They don’t need to be big, over the top things; just simple things such as: seeing a spider web after a gentle rain, finishing the dishes, or the ironing, talking to a friend, or getting a letter, not a bill, etc.
We have a seed ring to which four species of brilliantly- coloured parrots visit, often, during the day. They frequently feature in my Happy Book, as their antics are so funny to watch.
When you are having a Blue Day, look back through the book and find the things that made you happy. Choose something to do, to lift your mood. I write daily in mine. Later, at night, before I go to sleep, I give thanks for the good things that have happened to me.
It is amazing how that exercise helps you gain a positive focus.
My lymphoedema specialist suggested that I take some bioflavenoid tablets, sold here, under the label, Lymphodran. This Lymphodran helps speed up the elimination of both urine and faeces from the body. I find it helps. Check with your doctor or pharmacist for these tablets.
Lymphoedema can be a problem, but with acceptance and careful management, it doesn’t have to screw up your life.
Hope this is helpful… Best wishes,
Helen McKay, Sydney, Australia