Some of us have the added challenge of being the responsible adults raising children or teenagers, on top of a new diagnosis or being stuck in ‘limboland’. How do you cope? Do you have tips to share or questions to ask? Perhaps you just need the sympathetic ear of a fellow parent. I’m a mum in limboland, myself. Our daughter is 5 3/4 as I write, a bright little spark who says that Mr. Topsy Turvy has got into my head. She’s interested in the human body (and loves Nina and the Neurons on CBeebies).She can be so sweet and kind, but we do have days when her needs and mine don’t mesh. Her dad is working five very long days a week, though he is occassionally able to pop home for a couple of hours after lunch on one of those days, but it is mostly just me and her. It is hard to fit in rest periods when I have to be awake to at least keep an ear on her. We have fallen into a routine that gives us both some space in the morning, she gets to watch a film or some appropriate TV, I get my quiet time, to start the day gently. How do you manage? What help do you need? *For parents of children under 5, look up Homestart. They provide volunteers who can come and give you some respite by caring for your child in your home, with you present…but it means that you can rest, or do housework uninterrupted. The lady that came to us a few years ago, before this particular health issue began (I had depression briefly) helped by playing with my daughter and being someone for me to chat to. Do look them up.
I am not a Mum yet - I am 14 1/2 weeks pregnant. Was dx when I was 4 weeks pregnant, so haven’t had any treatment.
I’m really worried about relapse straight after birth, but also I have to start taking the DMDs (I do want to though) about 2 weeks after the baby arrives. I am worried about side-effects and how that will impinge on my ability to parent.
We can’t survive on just the one income, so I shall be going back to full time employment once my maternity leave ends. I am terrified that I won’t be able to properly care for my child.
We live in a very expensive area (South East). But all of our family and friends are here and we don’t want to move away. But my husband earns ‘too much’ (it’s really, really not a large amount of money) for us to be able to claim anything if I did give up work.
Where do you go from here? I guess we’ll just deal with it as it comes. But it’s a worrying prospect.
PG xx
Don’t forget child tax credits…or whatever it is they are called these days. When we were eligible because of having a child it was called child tax allowance. Oh and family allowance if you still get it these days.
Jan x
Yes, there are benefits you can get if working. There’s a disability element to working tax credits but you can’t get that and Employment Support Allowance (I looked into it). I’ve applied for PIP but goodness knows how much longer I’ll have to wait.
Pandagal - look into Homestart. I hope you’re having a lovely pregnancy 
Muddled - back to school already? Where are you? I’m in Lincolnshire and mine isn’t back until 4th Sept.Better go, special treat was delivered today…so I’m off to help her build her new Lego set!
I pass my hugs and sympathies to you guys, you do AMAZING. My kids were 7,12 and 10 when I first started having health problems. Now they are 17, 20 and 22. The thing I found hard to cope with back when they were younger was not being able to be as physically active as they were. I count my blessings that they weren’t younger when I first started all this.
the advice I would offer is, always have things in the home that they can do when you need to rest, like craft stuff, games etc. I admire all those with young kids and dealing with MS xxx
p.s. congratulations PG
I have two children of 7 and 14
The youngest of which has suspected aspergers. I’m finding it increasingly hard work especially dealing with my youngest ones outbursts. There behaviour seems to have got worse as my illness has got worse.
The trouble is I’m in limbo land so not being able to tell the children what is wrong is hard. I’m sure my teenager thinks I’m being lazy and putting it on. She’s pretty angry that she’s missed out on things that I’ve promised her when I was well and had to cancel because of my illness. My youngests outburst can consist of throwing herself on the floor in a shop and when I’m struggling to walk its a nightmare! But she can be so good at times too it’s completely unpredictable!
Im looking forward to them going back to school next week as I know I can put all of my energy into getting them to school, come back and sleep in preperation for the pick up. Just getting into a routine will be helpful. I’ve found it really hard having them around all the time and not being able to rest fully when I need to.
Children can be challenging at the best of times so it’s hard when your unwell. I just feel guilty and frustrated as I know what I want to do with them but I can’t and so then I feel so guilty 
Muddled, yes my daughter keeps asking to bake but often it is just too much for me. Its the preparation and clearing up that get me! I only have one and she wears me out 
Hello. I have 2 daughters. I am also in limboland. My daughters are 2 and 4. It is very difficult for me with them because I have them all of the time. The only family that I have close enough to help me is my dad. He is disabled and unable to care for my children. He helps me any other way possible but I have a daughter with special needs and both of them are in therapies. I constantly have appointments. I started taking nuvigil to help keep me awake. The only problem is that I can sleep right through. It helps. I cant say that it doesnt but days like today I can hardly walk and still have to make myself get up take care of the girls and take them to head start come home, clean and go to therapy appointments with them amongst everything else. The only thing that I can do is to lay down with them to nap occassionally. It doesnt always work that way but the days that I am lucky it does. I hate that my 4 yr. old says my do your legs hurt today? Are you having trouble walking? I am trying the best that I can and until I have a better diagnosis I am unable to work with no income. That is how my father helps a lot but I do not like it. I am 32 and have always been active until a few years ago. I hopw that all goes well for you. I would maybe consider the medication and just see how it works for you. I take half in the morning and half in the afternoon. If I take it all in the morning I crash in the afternoon. Good luck and thanks for the advice on your post.
I have just joined and it’s one of the hardest issues when dealing with my health. My kids are 8, 7 and 4 with my 7 year old having autism and other health issues, strangly with many of the same symptoms as myself. Some days I just want to roll up in a ball and cry with tiredness and constant pain but most of all not being a mum that can sit on the floor, play and have fun. I get no support and this recent flair up has really worried me as if I can’t take care of the kids no one else will so most days it’s pushing myself to the limit with the mantra of “you need to keep going” it’s so hard
Momof2 and Babz - have you called Adult Social Services via your local county councils? Maybe your GPs could suggest other avenues of help? Please don’t just try and push through and ‘keep going’. Ask for help. Keep asking until you get it! Take very good care of yourselves for your kiddies sakes 
Thank you for the advice. I have not reached out to anyone. I have always been afraid that if I do then they could take my children or something crazy by not being able to or getting to that point. Sunday night I was really scared. I have been worried but late Sunday night I was unable to put weight on my legs and support myself to stand. I thank God that the children we’re asleep but since then I have been walking with my cane and my legs are in a lot of pain from all of the cramps and tremors that I had and am still having. This episode has really scared me. I was crying on Sunday and so mad at myself and just ask myself why me? What did I do so badly to deserve this? I know that it happens to the best of us my faith has other answers as well. I just want to know if I have it or not and what if I get worse? What will happen with my children? Who will care for us? I know that it all sounds like a pitty party. I don’t mean to. I have always been very independent and not used to this lifestyle. People around me just don’t understand how it is or what it feels like to be in this situation. I am so thankful that I found this site. Thank you everyone for your support.
I think it is a personality trait that many of us here share, that we are very independent folk! It can be hard accepting that we need help. Personally, I’m getting over that stage now and am lucky to have family members nearby who can look after the littl’un for a couple of hours. I often drop her off at my parents when I go for an appointment in town, but that’s about as much as they can manage.
Right now, I’m so very, very tired, trying to get the messy 5 3/4 yr old to tidy all the toys she got out. I physically don’t have the energy to be bending and moving toys around. I managed to pot a plant and do some weeding earlier but that took me a bit over my limit! Now all I can do is encourage her gently, and persistently, to tidy one thing at a time whilst keeping myself awake by sitting and posting this. I daredn’t sleep during the day while it’s just me and her in the house, so I try alternating physical activities with more mental ones like this. Or just sitting with a cuppa, listening to the birdsong.
She’s just done her bedroom in no time at all…ok, her PJs were in her toy drawer but she did it! I’m telling her to tidy one area at a time. Now for the lounge…one sofa at a time, the rug, the floor around the rug. This is how I tackle my housework too these days! One thing at a time, breaking jobs down, allowing myself to do half a job if I need a rest in between. There are things that haven’t been done in far too long but I get the essentials done and hubby helps with certain things like mowing the lawn.
This is a frightening experience to go through, but the more we allow ourselves to receive help, the easier it gets. Our fears become simple questions and those questions, eventually, get answers. It’s hard being patient Patients! This place is like a virtual waiting room for me. Those who have been through all this have their experience to share and everyone brings something helpful.
Have you all read www.stumblinginflats.com ? The blog of a single mum (of a teenager) who herself has MS. She faces it with humour and a pretty level head! Well worth a read
Sending you all big {{Hugs}} and encouragement to ask for whatever help might be available to you
Hello. I am sorry that you are having a hard day. I am glad to have spoken with you though. It helps me to lift my chin and accept things for what they are a little more and hopefully eventually I will accept them totally and learn to be better about coping with all of these changes. I think that the hardest part for me is not being able to care for my children how I have always wanted. I grew up very poor and am very thankful for everything that I do have. I have worked very hard to get where I am as have most of us, but I always promised myself that I would provide more for my children and that I wanted to be the best parent as I am able to be. I have to say that I believe that I have done wonderful with my children but at the same time it is hard to accept certain things with these changes. Sometimes I feel as though I am just barely staying afloat since not working. I may have to apply for government housing, which I really dont want to do. I own a mobile home but it is the only home that my children know. I really dont want to change that but I may not have a choice. Without working I have no money for my bills. My father has been great but has been helping me since last December. At the same time I dont believe that he really understands this either because even though the dr. says that I am not allowed to work he continues looking for me a job that is less physical and doesnt understand that it too wears me out and my legs go numb, etc. Anyways, enough pity for myself I know there are others that are going through the same if not worse than I. I am just very blessed to have my babies. I will have to look for that book. Thank you forthe suggestion. Does your little one help you a lot? Sometimes mine do but other times says I want you to mommy. Too funny. How do you get them to cooperate more with you. Is there a trick? Mine are good but my littlest of 2 years is a total handful, maybe two. She is a lot to handle. Very hard to keep up with on my bad days. I hope that your night gets better and I am very happy that you have what sounds like a wonderful family to be supportive. Is there something that I may be able to tell my family to help them understand more? I try to explain things, but my dad was a drill sargeant on yhe army and it is very hard for him to accept that I am not working to support my family. He knows that I always have previously, but also sees it as if we are struggling so much why not go against what the dr. says and go back to work anyway. I did order some of the resources from the support part of this page. Have a good day and thank you once more. I hope tomorrow is better for you.
Momof2 - I haven’t been diagnosed with MS (yet - it is a very real possibility). I suggest you phone the free MS Society helpline (number at the bottom of the page). Perhaps ask your father to read this site, or the booklets that you get?
www.stumblinginflats.com is an online ‘blog’ (web log) You should be able to click on it in this post if it comes up highlighted blue. In the meantime, really explore this whole site, aside from the forum. Best wishes
Hello. Thank you for the suggestions. I will look at it. I haven’t yet been totally diagnosed either, but as well is a very strong possibilty. My doctor strongly believes that I have it. I always hope for the best. If it is, well I will learn to live around it. There is no other option. The good thing is that I have been on the opposite side to take care of patients with it. I have always been strong willed and pulled myself through many struggles or bumps along the way. I will manage to with whatever this is as well, just takes a little time. Once in a while it really gets me upset due to the fact that it is hard to manage at times day to day, but that is why I am so happy that I have found this site. I hope you have a good night. Thank you once more.
My 5 3/4 yr old still wets the bed at night, so we saw the school nurse at a clinic. She was so helpful and took into account my practical problems as a parent with Chronic Fatigue and nervous system issues. That part of the system is geared toward the child and so she wasn’t sure what help that she could offer me but the lovely nurse was wracking her brain to try and help me.
My hubby is out at work a long time, so I’m doing most of the daily, physical necessities like laundry and meals and the school run. The nurse suggested a mobility scooter (I don’t drive, it adds up to 4 miles a day.) Hubby is worried that if I get one I won’t get enough exercise. This is where I’m desperate to speak to the CFS team when my group therapy course date comes through. Please let it be soon!
Being a parent is a very physical job (as well as emotionally and mentally challenging).I consider myself to be on the milder end of the spectrum, even with the growing collection of symptoms I have. However, when the nurse gave us some simple,practical suggestions (I’d no idea you could get waterproof duvet protectors, yay!) I was so relieved.Little things can make a big difference.
Back to school tomorrow! I just wrote a longish post but the ‘form became outdated’ and for some reason it won’t let me copy from this text box on my phone. So all I’ll say is: we’re ready! I did loads of housework and got the girl all clean. I’m early to bed but proud of myself! How about you?