Tuesday, 11 March 2014

Taking 5...

It has only been a few days but it feels like such a long time since I last went through all your lovely blogs. I keep popping on with all good intentions but I am getting so tired so quickly at the moment that I just can't read that much, but I will.
I have just got back from the reumatologist. I can't decide if it was a productive meeting or not. Was confirmed that it is Ehlers-Danlos, it isn't going to go away(have known this since I was 16!) I can't be put on any more medication as I am already on it all, I am being referred to pain therapy again but told not to get my hopes up. OT again, physio again, I have to see some other consultants in different departments to deal with the other symptoms with the condition and told that I should look into having a second opinion from a specialist...IN LONDON! It took it out of me going a few miles up the road lol.
Just feel that when you have something long term or for life that you kinda get dismissed. There is a sort of attitude that, 'Well you know you have it so what more do you want?' My weight has come on due to my conditions, I have lost the ability to take part in all the activities that I use to love, I can hardly walk without ten ton of painkillers or a week in bed afterwards, they tell me that I have to be really careful with the activity I do due to being so sensitive to pain as my body has gone through so many traumatic, painful events that it has made me extremely sensitive to pain(I don't really understand this, I am assuming it means all the dislocations, slipped discs, scoliosis etc) I think I am great with pain, but she said something like 'you can deal with the big pains but it makes everything else painful like little pokes and prods' which is true, it does hurt when the children hug too hard or someone grabs me even lightly. 
I then get told to lose weight!!! Then I get told that losing weight is extremely difficult in my condition...I am just a bit worn out right now. I try my hardest to lose weight and it is a slooooow process. I use to have a lovely figure and when they look at me like I must love being overweight I want to cry and throw photographs in their face. I want to show them videos of me dancing and pictures of me playing with my children. 
I don't want stupid advice on top of statements that include, 'you just have to play the hand you have been dealt', 'you are not getting better but hopefully you can find things that help', 'ooooo you have the bipolar on top of this so that is going to make things harder for you!'
Talk about confusing and deflating. I know there is no cure but is it too much to ask to have some black and white responses and to have some positive and clear information that isn't followed by something depressing? 

I am sorry that I am probably depressing you all with this but I needed to let out a little steam. I am blessed in so many ways and I am so grateful for the life I have, the roof over my head, the children I have been blessed with, the love that surrounds me. That all keeps my spirits up, but sometimes when I wait ages for some answers and get nothing new and nothing concrete it gets to me and I moan.
I will be feeling better soon and much more positive(I might buy lots of flowers soon, they are awesome for lifting the spirit) and I will be popping by everyone's blogs to say hello and see all your gorgeous colour and creations, but for now I am going to curl up in bed with a Special K cereal bar and relax with a little hooking :)

Happy Tuesday x


  1. Oh Emma. A virtual (soft) hug is coming your way right now. I am so sorry for all that you're going through. no platituds here. I care and I wll be praying for you. Enjoy your happy hooking itme.

  2. Oh friend.....you hang in there. You are a strong woman and I get the feeling that you are going to rise above this through your own creative ways....I just know it! Doctors can be very frustrating as we have been going back and forth to doctors for my son. All the best to you....hang in there and I will be praying for you...Nicole xoxo

  3. Hi Emma, I'm not surprised you feel like screaming. This must be so hard to deal with. I hope you find some ways to lift your spirits. Flowers sound like a great idea , and what other time of year can you get a huge bunch for just a pound or two.
    Sending a hug too.
    Jacquie x

  4. I'm sorry you're having a hard time. I can't imagine living with chronic illness and I am sure you're doing the best you can. Take care of yourself, Emma.

  5. Unfortunately 'health professionals' are often very distant and unhelpful, seeing patients as a list of symptoms rather than frightened, worried and anxious people who could do with a hug and a listening ear. Having experience of this with elderly relative at the moment. Lots of facts are spouted abruptly and unhelpfully with very little kindness, empathy or understanding. I believe some compassion goes a long way, when we don't get it from others we have to try to give it to ourselves.

    If losing weight would actually help your condition then go for it. Do it for you. Acknowledge that you are doing it to help yourself get stronger, and realise it will take you time and that's ok. Even half a pound a week loss is worth it. You don't need other people for this, but you do need to be kind to yourself and that means acknowledging your difficulties and your achievements - sometimes that will be just getting through the day. You are worth the effort it takes to look after you. I'm really sorry you are having such a difficult time, I really don't think people can imagine how it feels and that is the problem I believe. Anyway, wishing you well for a good day tomorrow and then a good week. I hope things will get better for you. xx

  6. Dear Emma, I'm so sorry you have been dealt this hand, and think you should go out and have a big spend-up on flowers to fill your home and yourself with hap-hap-happy!
    You are always so very cheery so don't feel bad about venting a little bit on one post - just try to keep smiling and be sure that loads of lovely healing thoughts and energies are coming your way from over the sea and around and about! With love, Joy xo

  7. Sorry to hear you are on the medical roundabout. How frustrating and confusing it can be. It's okay to have a moan about it. Totally justified and some of the baffling things doctors say, it is no surprise that people come away wondering "what am I supposed to do with that?" It can be quite overwhelming at times. You have the right idea to nurture yourself with a bunch of flowers, time to crochet etc. Being kind to yourself is the best antidote to the emotional stress of chronic illness. Will you go to London? It may be daunting but perhaps that specialist there will have better insights and practical advice for you. Take care. Jodie

  8. Sending you lots of lovely warm hugs darling. I hope you managed to relax with your crochet and take your mind off things. It is so frustrating to be treated like a closed case rather than a person. I defy anyone to not feel like letting off a bit of steam after a day like you had. We all need to get stuff off our chest at times - especially when it feels like our bodies are holding us back from doing what we really want. As for losing weight hun, there will be a way, you just have to find the right one for you. However, I think you're goddamn gorgeous and while I know that it is a good idea for your joints (just as it would help my knees to lose a few pounds) and you want to have more energy for the kids, I really wish you could see the beautiful woman I see. Hope the rest of the week is much, much better.


  9. Oh Emma sorry to hear things are so tough, don't feel bad for venting on here as living with a chronic illness is hell sometimes, you just want to stop the ride and get off for a bit. As for the weight thing I can completely relate, I'm not allowed to exercise ha can hardly get out of bed so it's such a struggle to try and lose weight. It's so hard to find the right Dr, might be worth the trip, I recently went to see a consultant over 2hrs away in the car but fingers crossed he had some helpful suggestions, I did do a whole lots of research first though as have wasted far to much time and energy on wasted trip before. I really hope you find something to help
    Clare xx

  10. I am glad you had the courage to share. It's difficult to deal with chronic illness/conditions--I know. I will be praying for you Emma. You seem like a very courageous, super talented and loving person! Don't let anyone take your joy and serenity away from you--keep counting your blessings, don't give up looking for the answers and don't let anyone define the person you know you are inside:)
    Wishing you a day filled with the flowers of spring...
    Blessings, Aimee