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My first appointment with KDM

Discussion in 'ME/CFS Doctors' started by RML, Apr 7, 2014.

  1. RML

    RML Senior Member

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    Ah yes I know the place, I noticed people sitting out there on the way to the clinic and yesterday evening after dinner went for a short walk up that way to have a look at it. Couldn't work out though if it was for public or as I was assuming for the workers in that building since the sign on entrance drive said 'private'. It would have been a good alternative tonight if it wasn't so late. I will try there tomorrow if it is raining again too much to walk to the restaurant in park, and that place is closer too and without the uphill walk back from park!
    Riverview and Sushi like this.
  2. Valentijn

    Valentijn Activity Level: 3

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    My hand tends to get a little swollen after infusion too. I try to put ice on it soon afterward, both on the fingers and the wrist, and keep it elevated. I never let it hang down.

    When you get to the clinic you need to let the nurses know you're there :p Then they know to call for you as soon as they have a moment. Otherwise I think they look at the list after a while and realize you haven't shown up yet and go looking for you.
    Riverview, Sushi, justy and 1 other person like this.
  3. maryb

    maryb iherb code TAK122

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    Does anyone know where you would shop for food (gluten, dairy, etc free) if one was to stay at the Eurovolley.
    It sounds a nightmare for someone like me. Unless there is a supermarket nearby for fresh produce.
    Are there any cooking facilities in the rooms?
    Or room to put a toaster?.
    Riverview likes this.
  4. RML

    RML Senior Member

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    We brought a travel kettle with us so using that.
    Food is proving a big issue, I am a vegetarian but am not a big fussy eater either. the consultant I saw recommended to cut out wheat for 6 weeeks.. I hadn't started it yet but bread is plentiful here, and my main eating source.
    I did find a shop today though, not near the hostel but near the clinic. After infusions were over today, we went for a walk to find military hosp cos our bus from Monday will be stopping there. I don't want to get lost on my travels over to Schaerbeek on Monday. ACross the road from military hosp was a shop selling groceries. Now I didn't go in to check it out, and it did look small so perhaps not cater for gluten or dairy free , but you could get a few basic supplies. If we had known about it earlier we would have stopped and bought some stuff after clinic before heading back to Eurovolley.

    Having said that you can't buy much as there is no where to keep them or store. Chocolate melting in my room, tried to buy milk for tea and juice for readisorb and vsl. They don't keep long. Everytime we enter the room get a whiff of our fruit fermenting or something. It is incredibly hot and stuffy here, no air etc

    If you are coming in a car by ferry or by that train ? from st pancras, bring a fan , mini fridge or kettle etc. By plane we couldn't do this.

    yesterday my mum saw a guy in a room few doors down with a big fan blowing (it looked bliss) we asked him did he get it here at hotel, but he brought it with him.

    We did find out this morning a good tip for others for future use. The very tall lady at reception this morning when we went to get my Readisorb from the fridge, said something like its a pity there isn't a fridge in your room. I guess she was bored getting us stuff three times a day as i was fed up trekking down to ask for it. Anyway, my mum said something like it would have liked a fridge or be better, something anything.

    Then she tells us they have 3 rooms with fridges!!!! But we didn't know this so didn't request this or even ask. they were not free and it was our last day so wouldn't move then anyway.

    But for anyone going there again, request one of those rooms. It would have been great for our Vsl that first night, and avoided the panic of ruining hundreds of euros of meds. My mum hung the cool bag out the window, trying it with the string from her dressing gown around the radiator. but the strap broke so need to fix it.

    Because of the lack of cooking facilities, that really ruled the place out for me for a long term stay.
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  5. maryb

    maryb iherb code TAK122

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    @RML
    thanks you really confirmed what I thought, not really the place for long term is it.
    justy likes this.
  6. Valentijn

    Valentijn Activity Level: 3

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    @RML - Something we discovered to be very helpful at stuffy hotels is to open both the window(s) and the door. This can generate quite a refreshing breeze as air is pulled through.
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  7. RML

    RML Senior Member

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    @maryb I do know that others have stayed there long term for their treatment, so perhaps for some the benefits of the place is more beneficial than the downsides. Just not for me. The downsides too many and too much. The main one being somewhere to prepare proper food.

    @Valentijn Ah didn't even think of the door, it's very stuffy and airless in halls and lounge part. My mum was making skype calls and googling out there cos no wifi in room, so that would have aired up the hall for her too.
    Also, with window open all night, I have a whole load of bites and slight swellings on back of both my legs. I have enough trouble with nasty lil critter bites to deal with already!

    I'm just back from park restaurant, and even though I had little appetite, I wolfed down the meal I ordered, it was huge and three times what I normally eat, and wasn't planning on eating even half it, but I just kept shrovelling it into my gob. Nice to get a good meal.

    On the walk back, I started to get worse and weaker with every step. Now I don't know if this is reaction to IV's or just normal reaction. Whenever I eat very big very heavy meals, it always ruins me, I wilt and almost fade away, lose all my energy etc Since I lost my appetite months or maybe even a year ago, I rarely react to food like this because I am not eating much anyway.
    justy, Hanna, Riverview and 3 others like this.
  8. lnester7

    lnester7 Seven

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    @RML the one thing I learnt if Food brings you down, you mgiht need to test for food allergies, I don't get normal symptoms in gut. I get fatigue, BF, Joint pain from meals.... Also I was allergic to most condiments so it was hard to figure it out everytime I tried food elimination (I cook everything w garlic!!!) so no matter ho balnd mi diet I had to be tested to figure the whole meal things. Now when I void the nad ones I feel so much better. I htink we all progress to that eventually in CFS to food allergies.
    Valentijn likes this.
  9. bertiedog

    bertiedog Senior Member

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    Weak adrenals also make you feel a whole lot worse after eating so maybe looking into getting some adrenal support to see you through your treatment, even if only something like Siberian Ginseng or even adrenal cortex if you have lowish cortisol?

    Good luck with your treatment, it must be a nightmare not to have cooking facilities and also for it to be so hot. That would stress me out bigtime and don't think I would get much sleep cos of it and I would end up so much worse so think you are doing really well.

    Pam
  10. Riverview

    Riverview

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    Hi @Sushi -is that the Carrefour supermarket or is their another shop?
  11. Gingergrrl

    Gingergrrl Senior Member

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    @RML I don't know if this is possible but is there a store where you can buy some protein bars or snacks for the room that do not require refrigeration?
  12. RML

    RML Senior Member

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    @Gingergrrl You see there could well be, but not knowing the area or where to go, it's hard to know really. Tomorrow morning I move out of here, and while it is far from clinic, it is much more in centre for shops and amentities, whatever we might need. After we arrive, and get shown around by hosts, straight away we will go get some basics. they already sent us a kinda guidebook with local shops and such. There is one 5 mins walk , 12 mins and 21 mins away.

    but you are right, I shoulda packed a few power protein bars for these few days.
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  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Sorry I don't remember the name but it is more of a restaurant than a supermarket--simple, inexpensive things. All I remember is the location and the red circle.

    Sushi
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  14. Valentijn

    Valentijn Activity Level: 3

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    I took a small glass jar about halfway filled with Hemp protein with us, and an empty glass jar for shaking up the protein with water or almond milk. It rinses out very nicely, so I can re-use the jar without having to wash it. And even though it's mostly protein, it also has a nice bit of carbs and some fat as well, so it got me through a few meals when I didn't feel up to eating "real" food :p
    Hanna, Riverview and RML like this.

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