how can i cope? physical strain and emotional drain

[Alison C]

How to cope

By writing here as you have done. We are a very supportive group.

By talking to someone maybe a counsellor or psychotherapist as you have a lot to handle at the mo, and you have done so already. Maybe gp could be the first person to see? Your son may benefit from this too or seeing a clinical pyschologist to talk over this thoughts about hms. Hms not only affects our joints but also how we think about ourselves and often need the support from professionals to help us.

Sorry I did not reply to your other message at parenting section.

Also do phone the hmsa helpline as donna is fab and is very into people's feelings.
Alison

[madmum]

I have approached the g.p before as i also have post traumatic stress. I could not get any help. I was sent to see who i was told was a councellor but turned out to be the mental health nurse. She said i was not needing mental health help and to see her again would risk me being put under mental health. I have had to deal with my issues myself. My son has been recommended to child and adolescent mental health but how long it will take and wether he will cooperate is another issue. He was asked if he wanted to talk to someone on how to cope with bullying but he rejected it. He has faced a lot of physical and mental bullying which the head would do nothing about. For so long i have had to fight to get treatment,diagnosis etc for me and my son. I am about to start the formal complaints procedure over my local hospital. I also have ongoing complaints through my mp and am over the school and social services which started in march and have done little so far. There are never enough hours in a day,i do not want to be doing theses when my son is home as i want to spend quality time with him. I sleep very little as my mind is always active. I understand the office is in upheaval at the moment,i have left messages and have emailed donna. I have today sent him to school again with tummy and joint pain as told to by his rheumy,how long he will stay remains to be seen. He came home on tuesday with his kneecap maltracked. Not sure if today was because let again his teacher is away and he does not like the stand in one who he has again tomorrow. Roll on the weekend.

[madmum]

Just letting off steam. Getting nowhere with my son and his foot. Feel angry and frustrated. I am in pain myself and have not been to bed in months. The wet weather is really playing me up. No time to rest or have a hot shower or hot water bottle. I know no one can help but I feel like I do not count anymore.

[Fizz]

Oh Madmum, you most certainly do count. With all the problems you have to face, you still offer help and advice to others on here. You are much appreciated.
I think that with cutbacks in spending affecting all public services, getting medical support or just even an appointment date for ourselves or our children can be a battle, which on top of all the daily struggles is sometimes just too much. I can't really understand why there is such patchy local health service support for people with hms as since my son has been diagnosed I have come across a number of adults and children with hms (just through daily life, not a support group or anything) and yet there still seems to be a lack of expertise. No wonder all the London and main city clinics get swamped with cases. Hope things improve for you and your son.

[madmum]

Tried to be more positive today despite my son being close to tears so many times. Been to gp to get a private referral for him to an orthopaedic doctor. Also spoken to his physio and got appointment for his rheumy on monday(not orthopaedically trained but trying to help). Still angry the local hospital could deny him any treatment. Have emailed them telling them they have committed child cruelty by neglect of their duty of care. I hurt like fury and feel ice cold but cannot rest until my son has appropriate care and his pain settles. My own mum said it is my fault for complaining in the first place he was misdiagnosed, just what I needed. Have decided that christmas will be nothing this year.

[Fizz]

Hey, Madmum, it must be NHS unkind to "bendies" month. Just been told that children's physio services have refused my son's re-referral because he was discharged last year as he "did not benefit from physiotherapy". As this is the service with the specially trained physio who sees hms children and afaik physio is the main treatment for this condition this leaves us in limbo again. Fortunately, we'd decided to bite the bullet and pay for private physio treatment anyway whilst on the NHS physio list but we did think the NHS would kick in eventually. So the fund to repair the central heating (now broken for 3+ years) is going on the physio. Our problem was that son was not really motivated for physio when he was offered it and that now we've got him motivated they won't let him have it! Still at the heart of all this, I think, are the cuts. It's a bit like the injury lawyers - it you're not a dead cert. case they won't take you on. Hope you get somewhere with your son and sorry that you are having to pay to get help. Sorry if this is going a bit off topic, moderators, just wanted to reply to Madmum.

[madmum]

Gone from bad to worse. Been to see the consultant. To cut a long story short they do not believe he is in pain or that his foot swells. We apparently have been banned from seeing registrars by management and the consultant thought we also did not want to see him. He has now said unless I can present my son back to casualty with the swelling,even if it is 2am,he will do nothing. He gave no advice for pain,refused any support for his foot and when I suggested it could be because he has hms he reacts differently he dismissed it. He even said he is not sure it is even fractured and the radiologists say it is normal.(still not had the notes I applied for). So tonight my son has been in agony and very tearful. His ibs is bad as he got upset. The consultant even had the cheek to ask if it was me or my son he was treating when I spoke on his behalf when he was out of the room. So I feel even worse that I could not get a thick idiot to see how my son is suffering and can do nothing to help either. I now feel like I am coming down with a cold and my head aches with frustration and sinus pain. Still that is nothing. Think I will get legal advice.

[trekster]

Hi Notsparkly

First things first- sending you big and gentle hugs.

Although my children do not have health problems like yours coping with them is incredibly hard. I have a 2 1/2 year old girl and a 20month old boy. Most days I feel like I am about to have a meltdown and must say/feel on a daily basis that i cant cope and i need a break. You are right parenting with hms is physically and emotionally draining and getting through normal banal day to day life in incredibly tough. My partner is my carer and I honestly dont know how i would cope with the children at all without him- which makes me feel totally useless, and guilty and a whole host of other negative emotions. I realise that I am not really giving you any helpful advice here and I apologise- I suppose I just want you to know that you are not alone. Sometimes just talking to someone who can listen and understand can help with the emotional side of things. As far as the physical, well, the old pacing technique has got to be the best. I realise in situations where you are having to struggle with your child and when they are fighting with you that you cant just sit down and have a rest Maybe seeing as though its now the school holidays you need to find a new routine ( trying my best not to sound condescending, sorry) and rather than getting into a row/struggle just sit down and let him get on with his outburst and when he has calmed down a little, try again. I know this is much easier said than done and I really should take a leaf out of my own book at times and that also I know very little about you and your childrens personal situations and that this method may of course not be productive for you. If you continue to struggle maybe social services can help you a little bit- when my children were first born and before Ash became my carer a lady used to come to me once a week and take the baby for a walk for an hour- it really helped just to be able to have that little bit of time to sit and relax and let my body have a complete rest. Remeber you are not alone and you have a whole community of people here who will listen, not judge and support you
Take care
Simone xxx
Simone

That doesn't always work with autistics as their meltdowns can be reignited if the wrong way is used with them. It's to do with dealing with change by the way Notsparky describes her son. The hair thing sounds like a sensory issue, could he brush or wash his own hair? At least the scrubbing part.

[madmum]

Feeling very tired and very sore at the moment. Still having lots of problems with my son including having to fight him this morning to get his blood test. Last night he had his pain relief and was still in pain and requesting more help. We have tried heat,cold,massage,elevation and all in between but he was still complaining. As it was bed time I was not giving him more computer time as he has been criticised for that. He needs to crack the bedtime routine. He is on medication to help sleep. I am just finding it hard to remain upbeat with him as I am over tired and my joints are not helping. The calf tear is still very painful and not helping me rest. It is only my lovely lurcher keeping me going. Not sure where to go from here. He has no other pain relief,no one wants to up the medication. He is also hormonal which does not help. Tired and stress mum would welcome any advice.

[Fluffym]

Hi Madmum, there really is not a lot I can add. Have you tried stretching a little?

I am sending you a little to help you on your way.

fluffym