Are your children’s vaccines up to date?

Set a reminder

Please or to access all these features

Lone parents

Use our Single Parent forum to speak to other parents raising a child alone.

anyone coped with long term illness?

6 replies

happygolucky0 · 31/01/2011 19:43

Hello I am wondering if there is anyone who has dealt with long term illness while being a lp? If so how the heck do you manage? any advice would be nice right now.

OP posts:
Are your children’s vaccines up to date?
Querelous · 31/01/2011 20:43

Yeah I have MS. Apply for all the benefits / help you can. I found 'my' Homestart visitor an amazing help. I also have help (via social services) filling in forms etc.

They don't do everything and it is only a couple of hours a week but it has really helped me to get up-to-date with stuff and when finding out about and applying for grants for things like a specialist daylight, electricity and gas arrears, and when my washing machine broke. (Though it did take 8 months).

I got an occpational therapy asessment, they can loan you relevant equipment (bath boards, perching chairs, jar openers, electric tin-openers, baskets for cooking in so you don't have to handle heavy pans etc.)
If fatigue is a problem then plan your day around units of energy and prioritise your / yor cild's urgent needs first.

Put everything where it is easy to reach. Ask people for help when you can. Develop a relationship with your childminder / preschool. If your child is old enough explain in age appropriate lanuage what is going on.

Don't stress over the small stuff, who cares if your house is a bit messier than usual? Do stuff you like to keep your spirits up (however small). Don't deny who you are. Always have a short-term fun goal to work towards and allow yourself lots of time. Socialise with other parents. See old friends. Keep children to a regular, early bedtime.

I have also applied for a bursary for an independent school for my daughter (with the idea that if I get sick / have to do something else she could board occasionally).I dont work at the moment so my income is (very) limited, but when I get a job / can afford it I will engage a cleaner a few hours p/w and an aupair.

It's rough but getting easier and my daughter's well worth it.

Querelous · 31/01/2011 20:47

P.S. Don't worry, you can do it. x

happygolucky0 · 31/01/2011 22:29

Thank you so very much for taking the time to write all that to me, so very kind. A big well done to you for being so positive. It is certainly rough alright. I don't know too much about ME but heard it is similar to what I have fibromyalgia.

I just keep jumping from being Miss positive to total mess who is in tears non stop right now. It is so hard to accept that I have an illness which there isn't nothing that can be done about it. I surpose it wouldn't be so bad if I wasn't in pain everyday.

At the moment I have 3 jobs have pushed myself to total burn out and am off sick. Is there Homestart for under 5's? My son is 13.
Hhow did you go about getting an OT assessment? I am finding hard to wash my hair at the moment..... well just getting washed and dressed takes me most the day lol!! Thanks so much for the reply again x

OP posts:
Querelous · 01/02/2011 10:49

I actually have MS (Multiple Sclerosis). Are you recently diagnosed? Recently LP?

Allow yourself to grieve but remember you are still you. I don't know much about fibromyalgia, I just know how I go about it day-by-day.

Can you take anything for the pain? Pain is a bugger and it is really draining. I have trained myself into a (quite) high pain threshold by using visualisation / breathing techniques to 'go elsewhere'. I have pretty much done this myself but I hear others use meditation. It is tiring though and not easy when you have a child.

I chose to ignore my disability as much as possible and refuse to accept limitations to my career, (I'm 'lucky' that my disability is mainly invisible and within reason I can still do this), I also find keeping my mind and body active pursuing my dreams helps me ignore the illness. Which in turn makes me less stressed and I believe that helps. I found massage really helped me, not just with stretching out my muscles but also my self-esteem (sadly I can't afford it at the moment).

There are plenty of unique things about you that are not fibromyalgia, find them and what makes you happy. But you have to be creative in your thinking, budget your energy and take short-cuts where you can.

Listen to your body, sounds like you have been overdoing things. And that's o.k. as long as it is a short-term thing over something that will make you happy long-term. (Unless your doctor disagrees - in which case believe him / her). Can your son help you wash your hair? Have you got friends you can ask to help?

Can you afford to get a mobile hairdresser to do it / visit a salon? I have found people have been remarkably kind when I have been in my darkest times. (Though my family are crap and have only just acknowledged I have MS and rarely help (I can count the times on 3 fingers and still have change) with anything - I have had it for 19 years FFS!) Be your own social worker, look at it as a problem, try to divorce it from you, and find solutions.

There is absolutely no shame in asking for help, even from your son, but recognise that if you take this route it will be hard on him and on your relationship. Be sensitive and listen to what he feels comfortable doing, and make sure he gets a chance to have a normal life / respite too and ask social services if he is eligible for carers allowance when he hits 16.

Someone I know with older kids has found a lot of support for her kids from a local group for young carers. Also check out holiday schemes and after school clubs. Ask CAB / School.

Social services (for you as an adult not for your child) and DLA are also key to all this - ask your GP for a referral as an adult. It will take a long time. Is there a disability support group locally? CAB would know.

One warning, I found even with help filling in the DLA form was a really emotional, humiliating, draining and degrading experience. It also has to be completed (with supporting docs supplied) in a tight time-scale (I think it is a month). Ask your doctor if he thinks you will be eligible first. If you can get someone from social services / a fibro / disability support group who has experience to help it wold be much better. Do you have mobility / fatigue issues? Would a blue badge help? Having one has helped me more than any single other thing.

happygolucky0 · 01/02/2011 18:57

Ah you are such a sweetie and a massive help. Sorry I misread MS. I know alittle abit about that as have cared for people with it.Sorry to hear your family don't help you.You are doing really really well, and are an inspiration to me! Yes resently diagnosed, well two doctors have said that is what it is but am waiting to see a specialist. I don't really understand the process tbh. Have been lp most of my son's life. Went back with his Dad when he was 4 yrs old but only for 18mths. Had a another relationship when he was 7 yrs old for a few years then gave up.

I have called social services today to get an assessment to see if they can help at all. It will be around 4 weeks and the lady did say that with all the cuts they are not doing much work for anyone at the moment but it is worth a try.

We have a wellbeing lady attached to my job who I called today. She was great and has said I can go and get 6 sessions with a counsellor. She made the arrangements and the best thing is I can see her tomorrow. So am realy happy about that.

I would really lke to think that I can manage to go back to work even if its part time. I surpose time will tell.

As for the pain I am taking painkillers every 4 hours I am using a TENs machine twice a day. It is taking away around 50% of the pain .My energy is very low at the moment and am learning to pace to get my housewok done. Shopping is really hard work. Some have said to do it online, I just havn't got around to filling out the forms and don't tend to be organized enough to know what I want before I see it lol Maybe thats a job I could bribe my son to do (online data putting).

I did have to ask for his help to wash my hair last week. Felt awful asking him and don't think he was very comfy with it. (it is abit of a girly thing isnt it) I have manged today myself as my back wasn't as painfull as usual so am glad I don't have to worry about that for a few days. You made some good suggestions, and like you said it is about finding solutions to the problems so will take that on board. Keep wanting to go to the swimming pool( as they have a stand up shower I could use abit easier) but motivation (or energy) not with me yet for that. Anyway thats a goal I can work towards maybe. A BIG BIG THANK YOU for all your help so nice to talk to someone who comes close to understanding what I am going through.

OP posts:
Querelous · 03/02/2011 11:29

No problem happygolucky, glad I could help and good luck x

New posts on this thread. Refresh page
Swipe left for the next trending thread