Support thread for mums caring for child/teenager with CFS/ME. Part 2.

[PositiveAttitude]

Nice sparkley new thread for us!

This is the sanity thread for those with DCs suffering from CFS/ME.

"Old" members include:

PositiveAttitude - Me!
Dwardle Optimisticmumma twentyoneagain Chocaholic73 Katsh
and Dinamum

I was going to do a round up to introduce ourselves to any new people that wanted to join, but the old thread won't let me scroll back beyond January, so not much good and if I do it off the top of my head I will get it all wrong...
SO just jump in and keep the support and sanity flowing!

Come and rant and rave, get support and advice from those who have been there before you, but most of all come and share positive steps forward, no matter how small and insignificant to people who don't understand. Lets celebrate those small steps together.

I declare thread part 2 now open.......

[dwardle]

Hello - is anyone out there?

[optimisticmumma]

Hi Dwardle! how are you doing?

[katsh]

Hi, sorry for not being around for a while - just haven't quite had the focus to post, and didn't want to just do miserable posts. Both dd's have had birthdays - good but hard when both are not as well as they once were. dd2 is still doing quite well, and seems to be at least levelling out if not moving upwards. My dd1 who has a nasty nerve disorder is really struggling at the moment, so I'm finding that a bit difficult. I'm just tired out. I'm sure you all know that feeling . Thanks for asking about my weekend away Dwardle. DD2 survived with her dad and brother - a bit tearfully but ok. I had a good time with dd1 and my parents, although found my Mum in v. poor health so tricky from that angle too.
Nickschick - how are things? Sounds very tough for you all. Hope things are ok with everyone else.

[PositiveAttitude]

Hello Katsh, great to hear from you again. Yes, I know what you mean about being tired. Keep going, it wont last forever and hopefully things will really start to get a lot better for your DD. Sorry to hear about DD1 being poorly too. Life is so unfair sometimes.

Here I feel like shouting BUGGER, BUGGER, BUGGER, but of course being a fine young lady I will say, Oh Dear, Oh Dear, Oh Dear!!!! DD3 went to the college today for a look around and a chat with the support lady. She came home and promptly burst into tears because she hated it! She now doesn't want to go there and thinks being NEET seems like the only way to go! I think she has been a bit exhausted today by going up there, so I ma hoping that it is her tiredness talking and she will be persuaded differently tomorrow. She is one stubborn girl though and I could have an uphill struggle on my hands! (Who said, like mother like daughter!!!)

Hope you are all doing ok.

[dwardle]

Hi everyone
Good to hear from you Katsh but sorry your dcs are not great. I know the feeling about being tired out! Hi Optimistic!
Positive - oh no! After all that she didn't like it. Was it the size, the people or what? I bet you want to scream.
As I do - dd is struggling with a headache since yesterday am and has missed lessons yesterday and today - though she did manage a maths exam yesterday! She is so up and down yet managed to get an A for some coursework for a text she had missed ALL the teaching on. Great school support helped her to catch up and a mother with a whip to make her work! Now she is not so good. Oh well - remembered what it was like 1 year ago and no comparison really so I shouldn't complain!
Katsh - any news from DLA?

[twentyoneagain]

Hi to all - haven't been around as I came down with the most horrendous stomach bug last weekend and really only felt well yesterday.

Katsh - so sorry things are so difficult at the moment, you must be feeling overwhelmed by it all and probably working on auto pilot right now. Try to take care of yourself, but it is difficult as your DDs are so much younger and need you to do more. I am glad that things are levelling out for DD2 - that at least is one positive for you.

Dwardle - DD has done so well and should be really proud. You are right - a year ago she was so ill - you could never have envisaged her doing so well now. Take heart from this, she is improving all the time and the Easter break is looming which will be good for everyone.

Positive - Has DD said anymore about the college visit and is she feeling any better about things?

Hi to everyone else .

DD has been off school since Monday feeling sick and dizzy, simply a reaction to the stress of the last few weeks. We have spoken to school and are hoping the situation will start to improve. She can cope with sport, exams etc but obviously we are going to have to concentrate our efforts on helping her with confidence and self-esteem issues. Sure we'll get there in the end .

[PositiveAttitude]

Hi 21 sorry to hear that you have been feeling under the weather too. I hope DD manages to bounce back a bit this week and return to how she had been. She has come such a long way. Has the situation with the girls settled down?

Hi Dwardle, how are things your end? Only a few more weeks til Easter Hols. I hope the exam stress is not seting DD back.

Hi Choc how are things going with your DD now? I would love to be nosey have an update.

Katsh I hope you are managing to get some time to yourself. It sounds as if you really are having a bad time of it all round at the moment with so many things going on.

Hi Nickschick and Dinamum and OM. Hope you and DCs are doing well.

Here I am beginning to see how powerful the positive atitude can be. Since Tuesday when DD went to the college and came home distraught she has crashed terribly. For the first time ever she has been saying that she is not well enough to go to college, to keep up with the work there and to just be able to go there for the course, which is actually just 12 hours a week. - I say just, but she is only just managing the 3 hours a week at the moment, so perhaps it is me being unrealistically positive now. We have always had to watch that DD does not expect too much from herself and do too much and now all of a sudden we are the ones trying to get her to think positively. We have had the wobbly legs again and she was unable to walk yesterday, although has managed to stumble around holding furniture today so far. I have arranged a meeting with her education unit head on Tuesday, so I am hoping for a plan that she is happy with. She is no longer quite so adamant that she will NOT go to the college. I think that could have been her going into panic mode about not being able to do it.

Anyway, I hope you have all had a lovely Mother's day and all been spoilt rotten. Choccies, flowers and wine tonight? Breakfast in bed and luch out at the pub? No me neither, but there we go!!

[twentyoneagain]

Oh Positive - I am so very sorry that DD has crashed in this way. It shows just how delicate the balance is, and how easily an upset can change everything. You are so right about the power of being positive, we all know this is so but when it comes to putting it into practice it is not always that easy (goodness knows I am the last one who should be advising on this!!). Your DD has come on a long way and there will still be ups and downs - look at my DD at the moment - but she will recover more quickly and hopefully feel better about things.

I actually spoke to another Lightning Practitioner this week. She was really good to talk to and advised that LP isn't just for M.E/CFS, but can be used to help a huge number of problems including positive thinking and confidence boosting which is what our DD needs. We are certainly thinking that DD would benefit from something along these lines (whether LP or not).

Hi to everyone and I hope you all had a happy Mother's day .

[dwardle]

Oh dear - send both 21again and Positive huge virtual hugs and sympathy.
Cannot post much tonight but I REALLY think LP is worth looking at - does help re attitude and capacity to cope. Cannot post much this week but will be around later in week if you want to chat more about this. DD is coping - just and hanging on by fingernails - but was prompted to remember that this time last year, had to work at home as things were so C$£* Sorry - lurched into bad language!!! So - things do go up & down but do get better.
Have a good week all

[minimu]

Hope things aren't too bad with your DC's.

Just for interest Dr Crawley has been given funding for trials using LP
link

Great if some of your DC's could be involved

[PositiveAttitude]

Thanks for that Minimu. I will look into this with my paed. We are currently under he care of Dr crawley too. Its not starting til September though. I was hoping to be all well and fine by then, but there you go I am positive again...

[twentyoneagain]

Thanks Mimimu - that's really interesting. Will watch out for the results of this one.

DD had a better day yesterday and was so much more lively again.

How is your DD Positive - and of course all the others here?

[Chocaholic73]

Hi All - interesting to hear about the Dr Crawley/LP trial - will also watch that with interest. Have skimmed the thread, sorry there are a few ups and downs at the moment. The same for us here, DD had a very bad cold a few weeks ago (which Perrin lady said was good). It hasn't really cleared up though and I suspect she now has sinusitis and is feeling a bit rough. Having said that she has had a number of outings and got an "A" in her 1st Maths AS module so things aren't bad at all! I found a lady asking about her Y11 with CFS/ME over on General Health who is getting poor medical advice and support by the sound of things. Her name is Griffpop I think ..have directed her over here ..so look out for her. Must dash ..will try to be a bit more regular!

[PositiveAttitude]

Hi Choc. Sorry things are a bit up and down for your DD too now.

Had a meeting at the education unit today which turned out to be quite traumatic. I think we are getting to the bottom of DDs aversion to college though. SHe is petrified that she will not be believed again and treated badly like she was at the school. At least we can now work on that and try and get around it. SHe is supposed to have an interview on Friday which lasts for 2 and a half hours. No way will she be to string two words together at the end of that time!
Anyway, a good day today. We went for lunch after the meeting and she is still well enough to sit and watch tv with boyfriend this evening.

Hope you are all enjoying sunshine!

[katsh]

Hi all - sorry to hear of the dips going on elsewhere. We have enjoyed the sunshine and dd has ....drum roll.... ridden her bike in the garden for 3 afternoons in a row !!!!! I can't quite believe it - she's only 8 and a year ago bike riding was a major past time, but it's been 11 mths since she's been on it. She is starting to gain some confidence as well as having a bit more energy. She even coped with falling off it today - a bit of a cry and then back riding again. She's been having home tutoring for 3 weeks now and I think that that has really started to make a difference to her confidence. I think it's so hard for our children to cope with the illness and then as they start to recover to have to re-start so many things again. I'm definitely noticing that one of the greatest causes of fatigue in my dd now is anxiety. I really hope positive that your dd can keep building her confidence and that the college will be wonderfully understanding of her situation.
Isn't it great winter is ending : )

[optimisticmumma]

So pleased that you are sounding so much more positive Katsch! I do think the warmer weather helps!
Well...I rang Bath today to see if we could be of any use to the trial re Dr Crawley/LP. It is going to be a randomised trial with new patients. Some will do usual stuff (I suppose pacing etc) and some will be offered LP. The woman I spoke to sounded concerned as to whether this approach would work! I have to say I think I agree to an extent in that if you are on the trial will you give LP a proper go?? Anyway we offered...but I think they are looking for new recruits! PA with a bit of luck your DD will be in the group and then she'll have no choice!!
Well done to your DDs results Choc that's such good news! She must be v. pleased and you v. proud!
21again - you should look at LP for your DD as it does help with all the anxiety etc etc
Enjoy the lovely day...

[PositiveAttitude]

OM - Do you mean new recruits to the Bath centre, or new recruits to LP? As you know, we have been under the care of Dr Crawley for a year now. I am hoping to speak with DDs paed about this tomorrow and see if she fits any criteria. Do you think I should phone the Bath Centre about it? If not, i will still watch with envy interest.

Not good today. I am sure it is all this college issue that is causing stress and so making the physical side so much worse. ALthough college have agreed to do a small "interview" with me and DD tomorrow afternoon, rahter than the big interview that had been planned for Friday, which was for 2 and a half hours, with 45 teenagers and 6 staff, with a full on afternoon of activities and assignments for them to complete. Pleased we are out of that one!!!

[optimisticmumma]

pa - New recruits to LP I think! They were very polite but as DD had already done LP they couldn't watch her go through it iyswim so they want people who haven't done it. I think they are worried that everyone will want to do LP and nobody will want to do the pacing/card system but they have to do both to do the research! If I were you I would phone Bath and ask! I'm sure as your DD is under Dr Crawley already you will be in a good place!

Hope all goes well this afternoon. I'll be thinking of you...

[PositiveAttitude]

OM - Can you tell me where you got the phone number from? I cant seem to find it anywhere. If you arent happy to put it on here can you email me - directioneeded at aol dot com.
Thanks.

[PositiveAttitude]

Its OK - just found it, ta

[PositiveAttitude]

Just phoned them. Lovely lady. She said that she was under the impression that they would be taking new referrals on to the trial, not people that are further down the road. She did say that she would put DD on a list of people who would be willing to take part and pass this on to Dr Esther Crawley, just in case there was any opportunity.
A little disappointing.

Also, during conversation I told her that DD was doing really well and how pleased we were and she came back with "Oh back at school full time, that's really good!" EErrrrrr no, just one and a half hours a week. It sort of brings you back down to earth with a bump and shows how far we have to go! Not thinking of that, just how far we have come from the 24 hour 100% nursing care we were doing a year ago. We WILL get there.

Hope you are all doing ok.

Katsh - Hope DD is still able to get out in the sun shine and do a bit of "normal" childhood for small spells of time.

Dwardle - How are things?

Choc and 21 hope you are well and DDs are coping with things.

[dwardle]

Arghhh - am in shock. Just got new job!!
DD is going to gym at 8.30 on Sat with 2 friends. Which is more shocking?

[optimisticmumma]

Great and great, Dwardle! Tell me about the new job! Another headship? (nosy emoticon)

[PositiveAttitude]

FAntastic Dwardle on both counts!!!

[twentyoneagain]

Dwardle that is so fantastic - well done to you and to your DD. Things are really looking up for you and you should both be feeling pleased with yourselves .

Katsh it is great to hear that DD is outside riding her bike, we always found that the sunshine helped DD a lot - one very good excuse to get away during the Summer .

Positive it sounds as if DD is recovering far more quickly now. What is happening about the interview today?

Choc great news about your DD's result, give her a pat on the back from us all.

Optimistic hope DD is still coping with all the coursework. Roll on the Easter hols.

DD is back to her bouncy self this week, things have settled down at school - as they usually do with teenagers - but it does show that we need to help DD to deal with stress and anxiety.

Hi Nickschick - how is DS?

Hi to everyone else who reads this thread - Dinamum etc - it's good to hear from you whenever you're around.