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Lymohedema bliss dance

My experience with intensive treatment of Lymphedema

Week one at Meråker Kurbad ( Rehabilitation Center in Meråker, Norway) for intensive treatment of lymphedema and lipedema is now complete and I’m starting to feel pretty comfortable here. So I feel it is time to give you all a little update on how I’m feeling and a bit about what the intensive treatment entails. The first week has challenging, yet exciting, the personnel have been amazing, they have made me felt welcome and safe. It is easy to see that they perform their jobs with both dedication and pride. Their positive attitude spreads to the clients and creates a warm and positive atmosphere to be in. Even the personnel who not necessarily has anything to do with your specific treatment always greet you with a smile or a chat.  This type of positive atmosphere has so far made my first stay at a treatment like this very rewarding indeed.

Meråker kurbad. Intensivbehandling av lymfødem og lipødem
Meråker kurbad.

I try my best to absorb all the knowledge found in this place. The fact there are several other clients with the same diagnosis and problems as me is very comforting as there is someone to share experiences with. We also help each other through the hard times and push each other when its needed. All of us are ‘beginners’ when it comes to intensive treatment of lymphedema/lipedema, and there is only five of us. Personally I liked the fact there is only a few of us, it makes it easier to get to know each other. The fact that we all get along makes the stay here so much better and more giving. I must say though, for those of you who thought I was going on a spa break, it really ain’t nothing of the sort. The days follow a rigorous routine to the point the days often blend into one. Treatment, exercise, educating ourselves, self-training and meals. Nonetheless, it is wonderful to be in a setting where the only one I have to take care of is; is me. Being served food tailored specifically for you is particularly wonderful and it helps me focus on giving it my all when it comes to exercises and treatments. At home I need to proportion my energy to be able to: do my own treatments, do office work, consultations, housework, cleaning, cooking, spending time with the family, hobbies etc etc. I never seem to be able to find energy for all of it, so it feels amazing to finally be able to focus on myself and the treatment for a couple of weeks.

I must admit that I was curious about how it would be to come here. To get intensive treatment for lymphedema and lipedema at home is something completely different. I’ve tried it. You need to go to the physiotherapist nearby that has special training in lymph-therapy. You need three appointments per week, Monday, Wednesday, Friday. Before these hours you also need to do treatments at home with the pulsator-machine. Those who do not have a pulsator at home receive such treatment from their physiotherapist.

Kvinne ligger i pulsatorbehandling for lymfødem

At the physiotherapist you first get a manual lymph-massage. Then there is the bandaging. First a thin inner stocking, then the ‘padding’, which are layers upon layers of batting around the feet and foam-bandages from the feet up to the groin (or up to the waist, if necessary). Then you put on the compression-bandages over this. You have to bandage in different directions for the best compression.

The bandages has to stay on til’ Wednesday ( or two days). Because of the voluminous bandages, padding and compression garments, you also need to wear really large shoes and pants, which can be quite the hassle. The first time I went to do bandaging I was unaware of this, so I had to go home wearing only my bandaging and plastic bags on my feet. Also note that this was during winter in Norway, not a great scenario. However, now I’m luckily able to just laugh about it. This is one of the reasons I’m writing about this, so others can be prepared for their treatments.

Bandasjering av føtter ved lymfebehandling
Bandasjering av føtter ved lymfebehandling

The bandaging can get really tight, for me personally I need to move my joints around unless they get stiff and painful. Lipedema is a painful condition, so the bandaging of lipedema and lipolymphedema is even more painful than lymphedema. Personally I have lipolymphedema, so both the joints and tissue ached. Doing this at home without much information or anyone to really talk to, it became harder and harder to keep the motivation up. Doing regular chores around the house became an incredible hassle. The bandaging also started to feel claustrophobic. Sleeping at night became hard, because the pressure and pain, not to mention the heat from all the layers of garments became intense. Sleeping was basically impossible. I had to do something, anything, to get some sleep. So sadly, I was not able to keep the bandaging on all the way til’ Wednesday. During the middle of the night I ripped my bandaged off, I needed sleep. However, now I had to start packing and folding the bandages together. Nonetheless, this actually worked. The hours I had used the bandages made my calves shrink one cm. This is more than I lost exercising and dieting for five months.

So I courageously went back to get my back bandages on again. This time I experienced similar discomforts. I tried to keep them on for longer, but I still had to take them off at night. After this I gave up on doing the intensive treatment by myself at home. However I continued using the pulsator and compression garments as they also helped some.

This is when I applied for the intensive treatment at Meråker Kurbad. I got in! However, I had to wait almost nine months before they had room for me and another group of ‘first timers’.

I am so incredibly happy to be here now. I have done my best to educate and treat myself, but coming to a place likes this with such expertise has provided me with the ability to learn and understand even more. With my first and only ‘bandaging adventure’ fresh in mind, I must admit I was rather tense. After months with exhaustion I was worried I would be able to keep up with the program here. I decided to just envision and visualize doing well and getting good results. Here at the spa the treatments consists of lymphatic massages and bandaging on Monday’s, Wednesday’s and Fridays. These days we also do pool training and pulsator-treatments. We bring our own pulsators from home. We then receive lymphatic massages and bandaging. There is ‘Nordic Walking’ minimum 2.2 km, relaxation/breathing exercises, lymph-yoga every Tuesday and Thursday with bandages. I managed to bring training pants that were too big, and shoes that were too small, but after a couple of days I managed to get a new pair. I just remind myself that you become wiser from mistakes;). We also try to walk as much as possible every day, and there is personal exercises that we need to complete daily. There are mostly exercises with appliances. We have also learned breathing exercises that relieve the deep lymphatic vessels in abdomen.

I think its wonderful that we are educated about the reality of the disease, and how we can treat it and keep it in check. We learn about diet, getting the chance to cook from scratch, without salt. Henceforth there shall be no salt in mu life. Luckily we are given four meals a day while we are here, so we get accustomed to a lifestyle without salt. Going to a set table and have the chance to eat regularly is great. I lack nothing. I know first hand that I eat to little and too rarely when I’m at home. We learn basic things about the disease and receive lots of tips and advice (see earlier blog post about lipedema and lymphedema).

Having the opportunity to exchange experiences with others in the same situation as you is a wonderful thing. We cheer and push each other throughout all the exercises. I used to struggle with a ten minute walk, now I workout with the help of my comrades. This gives me an enormous feeling of accomplishment.

The first night with bandages was heavy. It was a Friday and we had to wear them all weekend. Although one must be positive and think positive, one should not repress what you actually feel. It was rather painful and I had to move my your feet all the time. I was hot and muggy, and nodded occasionally, but there was little sleep.This experience varies for everyone though, and it is not a universal reaction to bandaging. Although I experienced pain, you might not. It is indeed uncomfortable, but not so bad that you cant deal with it. I thought back to my previous experiences with bandaging and wondered how on earth I was going manage three weeks of this. But I decided to grit my teeth and endure.

It was the most painful when I lay down, so the next day I tried to do move around as much as possible. My goal was to endure an hour at a time. The next night the pain was so intense I needed some release.

Bandasjer for intensiv behandling av lymfødem og lipødem
All my bandages

A bunch of bandages fell on the floor and I admired my significantly narrowed ankles and slept like a rock. The following day was Sunday and I started the day with pulsator treatment, took on my compression pants and I went for a stroll in the lovely weather. Afterwards there was workout in the fitness room. After dinner there was an hour in the pool. I lay with legs raised when resting to compensate for the fact that I was not bandaged. My accomplices managed to have bandages on to the pool on Sunday afternoon. Fantastic!

One of my ankled had become really sore, so I started to dread Monday and new bandages. I had my pulsator treatment and had an appointment with my physiotherapist. Massage and new bandages. Even tighter this time. I took a deep breath and remembred that I was able to do it last time, and I was gonna make it this time as well. Luckily the physiotherapist put on the bandages less tightly over my aching ankle. Then we moved on to exercises and afterwards we had classes. The night was hot and uncomfortable, but not as painful as last time, so I managed to sleep occasionally when I found a good position. Today we had Nordic Walking at noon, the weather was fresh with a light drizzle of rain. It was delightful.

Bassenget på meråker Kurbad
The pool training on meråker Kurbad

Afterwards we had relaxation and breathing exercises as well lymph-yoga. Then there was lunch. I was even fit enough to go to the gym to do my exercises, but it was so crowded, so I chose to exercise later instead. So now I’m sitting here, with thick bandages on his legs and reflects on my first week.

The bandages are beginning to feel less painful, so hopefully I’m getting used to them. They say the beginning is the hardest. The more of the edema that disappears, the less pain I will have to endure in the long run. I think I will keep these bandaged on throughout the night.

The first day here we took measurements and at the end we will take new ones. So when we leave we will have concrete evidence if the treatments worked or not. Every time a tiny bit of edema disappears I’m overjoyed. I feel optimistic and in good shape, better than in a long time.

I was asked the other day if I would get a tax refund from being here. The fact that I got the opportunity to come here and get help I needed is much more important than a tax refund. Everything else feels immaterial. Another thing, in my younger days I was active in a medical association in Norway, named: Norske kvinners Sanitetsforening. The fact that Meråker Kurbad is run by the same medical association I myself raised money for, is a fun and joyous feeling.

My first week here has been great, I’ve broken some boundaries in myself and I have pushed myself more than ever. It feels good. I look forward to the two weeks I have left here read more in my next post.

 

 

blomst-sten

 

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