M E
Posted , 5 users are following.
Hi Everyone new to this forum as never posted anything before so please bare with me please.
I am so overwhelmed with worry that really don,t know where to start !! I was told after MANY test the conclusion was ME.Chronic fatigue syndrome but to be honest was a bit unsure what it was as I just thought I was run down with feeling tiered and but this condition has got so severe I am not living just existing, totally wiped out I have just woke after sleeping 48 hrs straight through and I am in constant pain in different parts of my body and cannot even lift my arms at times also unsure where to turn for help because my life if falling a part as before I had a normal life and happy Son ..Now I feel a utter failour as a parent as my 13 year old Son has been excluded from school because of being persistently absent also he sees me the way i am and gets angry all the time at home and school but now i feel i have no fight left in me, I have been thee school and explained all this but to be honest they where quite dismissive as if i was making excuses now i am in a situation where i now have to look for another school .
Any help would be appreciated as to what and where i get some sort of help ,I do go the hospital every few weeks and they say graded exercise helps but I can,t even move sonetimes, Sorry if this sounds like I am feeling sorry for my self and I know people are a lot worse off but I just want some sort of existence back as this is no life.
I honestly did used to be a great mum and did a lot with my Son Now I feel completely broken . Thanks for taking the time to read my story and heartfelt sympathy to all the other sufferers out there xxx
0 likes, 2 replies
Beverley_01 tracy2004
Posted
Hi Tracy,
This isn't about you being a bad mum, this is about you struggling with daily tasks due to ME. You sound like you need someone to fight your corner and so firstly contact the CAB. I've had an issue with school too and it's taken alot to get a decent outcome but I refused to be bullied into finding another school. My story is different as my child is awaiting a diagnosis for aspergers and this adds an extra dimension. However, my school forced a reduced time table on us which I wasn't happy about but, schools are a law unto themselves and I now actually think it helped. The reason I am telling you this is that my child's attendance dropped to 50%. We have 1 to 1 support now and are building back up to full time. I am lucky in that I have other older children who have been able to help out occasionally too. Who is there for you Tracy? Parents, brothers, sisters,friends,neighbour? Anyone who can help is a bonus. I never liked asking for help before this condition. I now have a cleaner and feel less guilty when I feel very unwell. I have felt extremely guilty at not being able to be "mum" but guilt changes nothing. Just see it as unhelpful and try to think of the good things you still do.
Contact school again. Explain your situation to the CAB. Contact your local disabilities support. Here its called gateway to care, it maybe the same with you? Google local services. ME is classed as a disability. See if there are any local schemes that can help. See if you can get an advocate for yourself that can work on your behalf with school. If you don't feel well enough to call, can you ask someone to do it on your behalf?
Does your son have friends there? Who he sees as beneficial in his life. It was one of the reasons I fought for my child to stay at this school. Schools cannot just throw your child out. Ask for a period of time to prove he can attend. How far away is the next school? If it would be even harder to get to, use that as a reason to stay. Also, ask the school if they have a school counseling service your son could access. You both need support right now for him to access education. As you attend the hospital re the ME, ask if they know of any help available too.
Hope this helps and gives a bit of a light at the end of the tunnel. The last 18 months was a difficult time for myself and can totally appreciate how overwhelmed you have felt. Be gentle with yourself, none of us asked for this awful condition and you are doing the best you can with limited energy.
Beverley
lisa00385 tracy2004
Posted
My illness hit when my kids were preteen years. That's hard enough anyway. Your a good person with a bad illness. Your self talk is important right now. You have to be your own advocate. It's a b***h but you have too. Don't beat yourself up it's very hard on the kids. It is what it is your sick so now what. You have to find purpose and tackle issues one at a time. I've had 20 years of learning how to live with this. So you be the boss. I know your ass is dragging. However if there is one thing I've learned beating up on myself did nothing to help the situation EVER!!! Sometimes being f*****g p****d can be a good motivator. Some days are bad and some are better. Can't change that. And loved ones are going to have to understand or not. Your not responsible for other people's reactions. Hang in there!!