hate this illness

lucymum
lucymum Member Posts: 113
edited 18. Jan 2011, 16:38 in My child has arthritis
How many other illnesses have you believing you are getting somewhere then punch you in the head in the same breath!!!
Lucy has been doing so well, and is tons better than this time last year (just before dignosis) but the last few weeks she just seems to be going down hill, complaining of pain again, some of her joints feeling warm!! I think it may just be the change in the weather getting to her joints but not sure what to do!! Am so sick, I hate having to give her regular painkillers but at the min that's what it is taking!!
At least with my illness I am ill all the time so do not expect to feel better, poor Lucy feels better some days and just wants to be normal, and then the next she is "ill" again!!
Sorry for moaning, I just know that you all understand, I try and talk to some mum firends of mine but bless they have no clue and while they try to sympathise it just feels like they are humering me!!
My hubb gets so upset, he hates his big girl being ill. It getting to him more now she lost all her weight, put on with the steriods, and is now under 3 stone, at almost 8!! We just all feel dishartened!!
Thanks for letting me moan x x x x
Hope you and your children are all doing well x x

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    The variability of arthritis is one of it's most difficult features, I think. It is quite possible to be OK-ish one moment then in trouble the next. One never knows quite where one is with it: as adults it is easier to deal with the rougher days but for a child it must be so much more difficult, and for the parents too. I am so sorry. I hope she feels a little better soon - if the painkillers are what is needed then use them: I know that they are not an ideal treatment but life has to be as comfortable as possible, that does help one cope. I wish you all well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • littlemummy2
    littlemummy2 Member Posts: 91
    edited 30. Nov -1, 00:00
    Hi, The weather is a factor in jia, my daughter is exaclty the same every winter she has flare up and has warm joints. But when you go to see specialist and tell them they look at their joints and say no active joints.

    I have invested in some thermals for phoebe just to try to keep her warm. Hope everthing works out for you.

    Michelle A.
  • lucymum
    lucymum Member Posts: 113
    edited 30. Nov -1, 00:00
    thanks for the responses, it's good to know there are other out there!!! I have the same problem of the dr's looking at me like i am blowing it out of proportion!!
    The school are slowly understanding but I know it is hard for them to see her playing in the school yard then have her complaining during lessons she is tired and in pain, they think she is putting it on to get out of doing work. My argument for this was how can you say this when she got the highest marck for maths sats in her class and that was with missing over 30 days during the school year!!!!!
    She is still up and down and can get emotional, but she does understand and knows i empathise being in pain every day myself. She just needs to learn to pace herself!!
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    lucymum wrote:
    thanks for the responses, it's good to know there are other out there!!! I have the same problem of the dr's looking at me like i am blowing it out of proportion!!
    The school are slowly understanding but I know it is hard for them to see her playing in the school yard then have her complaining during lessons she is tired and in pain, they think she is putting it on to get out of doing work. My argument for this was how can you say this when she got the highest marck for maths sats in her class and that was with missing over 30 days during the school year!!!!!
    She is still up and down and can get emotional, but she does understand and knows i empathise being in pain every day myself. She just needs to learn to pace herself!!

    Oh hun I hear you there, I have the same problem with our school although she's only in reception so they "don't care" at the moment. At parents evening we got told "as she doesn't speak to me, and has missed so much and gets tired in the afternoon, i've been unable to assess her" in other words you couldn't be arsed to try. I'm dreading her attendance sheet in February that we're all given.

    As for pacing if you find an adult who can pace then they can teach us how to teach our children to pace. I've yet to find an adult in chronic pain who knows how to pace themselves lol, My dad and husband are the worst they feel good so get "all the jobs done" while they can then spend days sometimes weeks suffering. I've never suffered chronic pain but can understand to some degree after haivng a section to have my last child and wasn't able to do anything for ages and as soon as I started feeling well enough I just kept overdoing it lol .

    I try and pace Kayleigh but it just never happens and school def don't understand :(
  • lucymum
    lucymum Member Posts: 113
    edited 30. Nov -1, 00:00
    illihor wrote:
    lucymum wrote:
    thanks for the responses, it's good to know there are other out there!!! I have the same problem of the dr's looking at me like i am blowing it out of proportion!!
    The school are slowly understanding but I know it is hard for them to see her playing in the school yard then have her complaining during lessons she is tired and in pain, they think she is putting it on to get out of doing work. My argument for this was how can you say this when she got the highest marck for maths sats in her class and that was with missing over 30 days during the school year!!!!!
    She is still up and down and can get emotional, but she does understand and knows i empathise being in pain every day myself. She just needs to learn to pace herself!!

    Oh hun I hear you there, I have the same problem with our school although she's only in reception so they "don't care" at the moment. At parents evening we got told "as she doesn't speak to me, and has missed so much and gets tired in the afternoon, i've been unable to assess her" in other words you couldn't be arsed to try. I'm dreading her attendance sheet in February that we're all given.

    As for pacing if you find an adult who can pace then they can teach us how to teach our children to pace. I've yet to find an adult in chronic pain who knows how to pace themselves lol, My dad and husband are the worst they feel good so get "all the jobs done" while they can then spend days sometimes weeks suffering. I've never suffered chronic pain but can understand to some degree after haivng a section to have my last child and wasn't able to do anything for ages and as soon as I started feeling well enough I just kept overdoing it lol .

    I try and pace Kayleigh but it just never happens and school def don't understand :(

    Oh yes I am the same I am on morphine but still insist on doing everything I can. my argument I did not have kids for them to be my carer and not have a childhood cause I can not do anything. Unfortunatly Lucy has my stubbon streak. THE TEACHER CAUGHT ME AFTER SCHOOL YESTERDAY AND ASKED WAS i AWARE lUCY WAS COMPLAINING BOUT HER JAW as if she was making it upand only saying it at schol to get attention. I replied that yes I was aware, she not eating properly because of it, and also her knee joints are sore . oh right the teacher said, well as she does not really tell us she is in pain we were not sure weather to believe her!!! ffs!!!!!! what they going to ignore next the child being beaten up at home, oh well we did not know weather to believe him when he came in with a black eye, and broen arm, oops!!
    It drives me mad but hopefully we will get there, lucy has been dignosed for a year in december, and the novelty has warn off for the school, but i think reality will set in with them soon and they will realise that she going to be like this as long as they have her and they have to get used to it!!!
    She in key stage 2 juniors now and in the same school so all the teachers know her, god help them lol, so hopefully it will be easier in years to come
    I hope ur little one feels better soon x x
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    Kayleigh is the same she doesn't tell them she is in pain at school, will go and sit quietly for a bit but that's all, then she comes home and flakes out :( Like you she was diagnosed last December and just like you the novelty is starting to wear off for school. She was in the nursery there and nursery and reception children are all in one big unit with seperate classrooms for individual teaching but most of the time is spent mixed together so they know her very well. They have forgotten how bad she was and the fact that I used to get called up weekly as she was in "too much pain for them to cope with her" what's the difference now, we're finally under control (well sort of) but they are under the impression that she's "ALL BETTER" but she's far from it the only thing keeping it at bay is the medication she is on. I don't want her treated differently or special from other children but they have to understand and learn that she can't/shouldn't be doing certain things as it will impact on her later.

    I know if Kayleigh's jaw is hurting as she stops eating, she won't tell me if she's in pain but I know plus her face changes shape ever so slightly but I've learnt to notice these things, I tell school that it's hurting but they never take it in, she doesn't speak in school as it is, and hardly eats. One good thing though this half term she aksed for a pear then asked me to wash her fruit which is great as it means they have listened to that request that she HAS to have all fruit washed before eating it.

    Schools are terrible aren't they sometimes like what you were saying about the teacher asking if her jaw was hurting and not believing tour school just assumed it was arthritis hurting when in fact Kayleigh had sprained her ankle ffs, I mean the child was running around then suddenly was on the floor crying in pain gone as white as a sheet i felt like screaming at them the enxt day after we spent th

    Sorry ended up being my mini rant there too hugs. e evening up a&e .

    Michelle xxx
  • littlemummy2
    littlemummy2 Member Posts: 91
    edited 30. Nov -1, 00:00
    I know what you mean about school in lower foundation and upper foundation phoebe's teachers couldn't be bothered, but her teacher in yr1 is brilliant, i tell her when phoebe is complaining about pain, she came out once and said phoebe had complained about hips.
    Yesterday she had her eyes checked and found to have uveitis again, she's gonna keep an eye on her and let me know if anything is wrong. I think some schools can't be bothered to find anything out, if you find it difficult you could ask the p/t or o/t to go in to school and speak to them. Phoebe's did that i thought it was great they did this.

    Michelle
  • stephiey
    stephiey Member Posts: 61
    edited 30. Nov -1, 00:00
    hi lucymum
    things are very difficult, they are a lot of ups and downs that you'll experience. i know my parents feel terrible when im so ill. im 18, and have had jia since i was around 4/5. things are alot better then they used to be. and i am very sorry to hear of the pain that has affected your family. i sincerely hope things get easier for you soon!
    and i definitely agree with your choice of topic heading!! i think all of us here do!

    you are a very strong woman, you should be very proud of yourself!
    best wishes to you and your lovely family

    Stephanie x
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
    Hi,

    Definitely see if you can get another professional to go in and talk to staff about athritis - about how it can be fine one minute and not the next; how certain activities can make it worse; about how it can't be cured ... but managed - and how well managed it is varies. It really helps for it to be a professional and not "just" :roll: so and so's Mum!

    Speedy
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • caz.thomas
    caz.thomas Member Posts: 6
    edited 30. Nov -1, 00:00
    Hi
    i am new to this site - my 14 year old daughter has just been diagnosed with jia - it has come as such a shock as she has never been really ill at all in those 14 years - we had hoped it was just restricted to one joint but over the last weekend her knee has become infected and she has to attend hospital tomorrow for injections- i am having the same type of trouble with her school - no one seems interested in her pain or the fact that she is missing school - she is in year 10 and has GCSEs to do - how do you make them listen how important this is - i have given them the information from the consultant at the hospital and spoke to the specialist teacher in school who is supposed to help her nothing seems have got any further - things are so bad with her at the moment with pain and stiffness i have to help her out of bed this morning
  • Alice's mum
    Alice's mum Member Posts: 21
    edited 30. Nov -1, 00:00
    Just wanted to post a positive note and especially in reply to caz thomas. My daughter is 15, recently diagnosed in September and in her final year of GCSE's. Her school have been incredibly supportive and we have regular email contact and meetings with her year 11 phase leader. Even the Head has promised they will do everything possible to help our daughter achieve her potential. They have managed to reduce her school timetable so she is only in school till 1.20pm every day, given her time out in the library if she is struggling and she has been given a laptop computer for use at home with all the programs she needs for her GCSE subjects. She has a learning mentor that she can go to, if feeling poorly in school, who will also speak to individual teachers and get her work from any classes she misses due to appointments or if she is too ill to get into school. She has had to drop GCSE PE but in the scheme of things I think we can cope with that one! All this has been achieved without our occupational therapist needing to get involved as we have such a supportive school. I would suggest if you are not getting the support you need, speak to your occupational therapist, if yours is as good as ours I am sure they will be very helpful indeed and will educate the teachers about this horrible illness. Good luck.
  • stephiey
    stephiey Member Posts: 61
    edited 30. Nov -1, 00:00
    I'm sorry to hear your little girl isn't doing too well. I know that from experience JIA is so unpredictable and severely frustrating! Im sure I've said this before but I can't imagine how hard it is to see your child suffering. I know that I always felt bad when my mum was upset because I didn't want her to be upset as well. I know that it's hard to see them so upset and in pain but trust me, your support is helpful. I have no idea where I'd be without my mums help. I'm 18 now and she still comes with me to all my appointments and scans etc. I know you may not realise it now but she really does appreciate it all and when she's older, she'll appreciate you even more. When I think about all the fights and frustration my parents went through to get me the care I needed when I first got diagnosed when I was 4, I can't thank them enough for being so supportive.
    You are all obviously extremely strong women being able to go through your general life let alone taking care of your children. Thank you for being so inspirational and taking care of them, when I was little, if I understood what was going on, I would have thanked my mum and dad everyday for being so strong.
    I hope you all have a good stable new year and genuinely hope your children aren't in too much pain.
    Lots of love,
    Stephanie
    X
  • Colin1
    Colin1 Member Posts: 1,769
    edited 30. Nov -1, 00:00
    How wonderful to see so much support for you from people who know how it feels.
    My heart goes out to children and mums who suffer I just wish I had a magic wand.
    Take Care
    Colin
    WHEN GOD GIVES YOU LEMONS MAKE LEMONADE
  • cathhankin
    cathhankin Member Posts: 28
    edited 30. Nov -1, 00:00
    I agree with previous posts about getting a professional going in to speak to teachers in school. I personally think that people should be made more aware about RA in children as lets face it- it's usually associated with old people.
    I used to be embarassed to say i had it, but now i'm not- i want people to know that i have it and make them aware it can affect anyone.

    Concerning your little girl, as long as you are doing what you can she will appreciate it all. I can't imagine how my mum felt when she saw me in tears from the pain, crying from injections, sleeping when in from school. both mum and dad just dealt with it, took it in there stride. to the point where my mum took me to see my consultant ( my appointment had been put back 3 months, but we went on the original date) and the doc sed " im only ment to see u in 3 months" my mum stood her ground and said " my daughter is ill now not in 3 months" . i will always thank my mum for speaking up for me and sticking by me.

    from my experience of school too, they were pretty good. i got extra time for GCSE's and they were leniant if i was late for classes.
    however i was off for 5-6 months in Y10 and on my first day back my english teacher took me to one side in lesson and sed 'u may have to take year 10 again...' It broke my heart. i though i was coping- she thought different. however, if anything made me determind it was thta one single comment. I was determind to get my gcse's and finish school with my freinds. and i did. Followed by my A- Levels and my degree, now working full time.

    your little girl will appreciate everything you do for her, just don't back down and stand your ground, as my mum used to say it should be a case of "you say jump and the doctors say how high ?"

    x x x
  • Shanedegs
    Shanedegs Member Posts: 6
    edited 30. Nov -1, 00:00
    Hi there,

    Just to say I am having similar frustrations with my daughters school. I have recently started to be concerned for my daughters future and progress at school due to a decline in her health again.

    Even though I have kept the school and her teacher up to date since being diagnosed, i have not had any additional support from the school.

    This weekend I was speaking to a close friend who is a deputy head at another school. She informs me that as soon as I informed the school of my daughters condition Polyarticular JIA the SENCO (Special Educational Needs Co-ordinator) should have been in contact to discuss her needs.
    They should create a file and keep record of the pupils progress as well as sorting an IEP (Individual Education Plan) to cater for her needs during flare ups, hospital appointments etc.

    These records will then be passed on to secondary school to ensure the support she requires continues. Allowing her to acheive her full potential.

    I have this week asked for a meeting with the SENCO to get the ball rolling. As my daughter is only in year 4 I am hoping that at least we will have things in place early enough to reduce the impact her condition has on her schooling.

    It may well be that most of the time once we get the disease under control she won't need anything different from everyone else, but at least if things don't get better she will have the support she needs.

    They can help with more time to complete exams if the pupil struggles with writing or even providing a scribe to write their answers for them. Funding for specific equipment laptops etc.
    The IEP could deal with ways to ensure she takes part in PE in other ways rather than just physical when she is unable to do the physical stuff, like blowing the whistle to start the race or recording scores etc. Things that help to keep her included rather than making her feel left out due to her illness.

    I would recomend asking to speak with the SENCO. Every school has to have an appointed member of staff for this role and a policy by which they work.

    Good Luck, I will keep you posted on how I get on.

    Shane