Before leaving for holidays Jaida was having a very difficult time with 4 migraines a week, loosing weight & hitting rock bottom. Her poor little mind just couldn't cope with her body & head pain, she ended up clinically depressed. It was a scary time, cooking her favourite food, her eating a mouthful & saying "I just can't eat, I don't know why". Hearing her say "I don't want to live like this, I hate my body, I want to die". I knew she wasn't well, her psychologist recommend anti depression medication as soon as possible. Or GP was beautiful telling Jaida she has been strong but her mind was now exhausted and adults would be the same. He told her she was a strong little girl. Jaida sat crying the whole time, so was I. She started the medi and also melatonin to help her sleep.
We left the next week to travel up to Darwin. The warmer weather is always better for Jaidas joints & migraines. Three weeks in Jaida woke up whistling & singing. I hate all the medications Jaida is on but I was so thankful to see & hear her so happy.
Jaida & I climbed Ayres Rock, which was a life goal of mine. It was Jaida who wanted it more & helped me as I was scared of the height. Reaching the top was an awesome feeling. I realised why Jaida is the person she is, it's her determination in life.
We all loved our trip & to have the kids well was wonderful. Now home unfortunately Jaida has started having migraines twice to three times a week. Due to her joints being the best in about a year she is having a ball. Played her first game of netball, played in a inter school golf tournament (which she won) and a cricket tournament. As you can see she loves her sport, when she is well loves to be a grade 6 girl having a ball.
The only thing that went a little badly was her legs & arms are covered in ulcers due to mozzie bites. Now 7 weeks old they are slowly healing but have great photos to show the specalists in Paris.
I have been catching up on posts, I think if there are more of us in Paris we will be able to show the specalists that our bodies seem to be so similar and NOT unusual.
Michelle & Jaida
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Michja
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Hats off to you both as you really verbalise just how difficult this condition can get at times. In particular for your lovely daughter who has so much determination in life.
Having all that determination means occasionally having to give in and let the mind and body catch up with each other. I am glad that the Doctors recognised this and also I use melatonin myself when my sleep pattern gets out of kilter.....it works well for sleep patterns and is more natural than other sleeping drugs.
I could just visualise you both climbing Ayres Rock and while reading I found myself routing for you both to get to the top....and you did.
I am sure that will stick with you 2 forever and you have both come a long way since you first joined this group.
I agree with showing the specialist in Paris just how similar we all are...it would be great to hear their response if we could get one. There was some talk of one of us who are going to get some sort of list of symptoms that we all share....not sure what happened with that.
Hi Andrea, I was going to leave it till a bit nearer the time to check I'm well enough to set off for Paris....I've had an awful couple of weeks and spent e last week in bed.
I will definitely write a post asking for questions that anyone wants me to take forward to the Q&A session and I will write a post on my return.
We all talked a lot about confusion and jelly legs being underrated as symptoms. I also feel there should be a specific fact sheet for pain....I feel it's impact is underrated.
As I said I'm happy to take any questions with me folks.
Great to hear you all had a good time. I would love to climb Ayres rock- what an achievement. Even when ill we need goals to achieve, as well as different medecines to help us and all kinds arfe important. The sun always helps we too and we have had some wonderfuk warm weather this year - especially welcome as I have been unable to go abroad this year,
In my experience of the Centres of excellence in Uk they are aware of many symptoms we share and are open to what we say. We need to treat these drs as our friends and approach them as 'people on our side' if that makes sense. I know that has not always been the case with drs we have experienced in the past. In fact I may need to engage with local hopsital later today and am thinking of asking to see immunologists as the local rheumatologist seem a little out of kilter with London Centre (trying to be diplomatic here!!).
That's really cheering news. Obviously I am so happy for your daughter and especially for you as the mother, as I'm sure you hide your feelings!!
I know when we go to Spain the warmth just envelopes me and my aches and pains are much easier to cope with enabling me to do things I can't do at home in the UK.
Looking forward to meeting you in Paris, and hope to grab a coffee and chat.
I am 46 and never been depressed but a few weeks ago my pain was so bad for so long I felt death would be a release. It breaks my heart that your daughter experiences this so young, and as a mum I feel so moved for you as to how dreadful it must be to see her feeling this way.
Remember there are medication that can be given with a daily dose to prevent the migraines from coming on, until I had to reduce my dose I had a few months free of the migraines by taking Amitryptyline.....many if us on here use a "prophylactic" to prevent them in the first place. I find it very difficult to stop my migraine once it's started so prevention is definitely the way forward.
I'm so glad she had a break on holiday, Ayres Rock is in my list of places to see so I can only imagine how breathtaking it must have been for you both.
As I said I hope we can share some time at the conference. Jill xx
Thank you all for the lovely responses. Yes this disease tests us all but some more than others. I know when Jaida is having difficulties my body crashes with the stress. When we are both well life is heaven on earth.
Jill it will be wonderful to catch up and finally put a face to all this online chat. Ha. I can hardly wait to meet the best of the best in Behçet's disease. I'm putting together a CD of Jaidas photos & trying to get as many blood results and a list of medications. I think I read that the Drs would be interested in info from all patients? Or I might be wasting my time. I think in one of the other posts an Australian lady was trying to find funding to go, I haven't had any luck but if you have please let me know.
I do feel happy with the care taken at the Royal Children's Hospital, but I just want to know we are on the right track. At times I know Jaida feels its all useless but we have her in our lives and I'm just so greatful for that.
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