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Feeling a bit low

Hello

Just needed to offload as I am fed up with being brave!

My little girl is nearly two and a half, and we spend all our time being brave, looking on the bright side - she has a condition which normally has a very bad prognosis (days to live) so she is doing great. She is a happy little girl, but her development is very delayed - she is working towards sitting unsupported so can’t yet crawl, walk, talk etc. And there is still that shadow as to how long we may have her for (which we no longer dwell on but at times like this its still there). We love her to bits and mostly have gone past the “why us/ it’s not fair” bit and just get on with it and take things one day at a time, live in the moment, not think about the future etc etc.

But I’m scared. I haven’t heard back yet after my second MRI so it doesnt sound like anything urgent has been seen, but given that a meningioma is usually benign I am not sure that would count as urgent anyway, and there were definitely indications of demylenation in the first one -“several” in both my brain and spinal cord. It just feels like too much for one family to go through, and has brought back some of the “why us/its not fair” stuff.

I just want my son (6) to have as normal and happy life as possible, and I worry that my husband (who is fab) will struggle if the balance of what I can do or not changes at any point. I am self employed (part time) so have no paid time off - and my job is also part of my coping strategy too.

And yet all this seems silly on the basis that my symptoms are so mild - if I knew that was all I had to deal with it would be fine, its the worry of what might happen next, and the feeling of not being in control x

hi ali

hope your daughter is doing well.

never lose sight of the fact that you are dealing with a heck of a lot.

please dont worry about the results of your MRI you will find out in due time.

worrying about it doesnt bring about a better outcome.

concentrate on your baby and your son.

does your local education/health authority offer Portage? it would be useful for your daughter.

have loads of cuddles with your children, the best medicine for a mummy

carole x

Massive (((((hugs))))) It’s no wonder you’re feeling down/scared/angry - that is too much to deal with at once :frowning: I am superconfident that the ?tumour is nothing to worry about so I’m going to focus on the MS possibility. I know you must have seen me write this loads of times, but I write it because it is true: MS is not the end of the world. What I write less often is no less true: children usually take a parent with MS in their stride. My two were 3 and 6 when I was diagnosed. My daughter (6) rather guiltily remembers being pleased because I was home more. My son doesn’t remember anything other than me having MS and doesn’t give two hoots about it - I’m just me. Your son has his dad to kick a football about with and a mum who might not be able to join in so much, but who will be there cheering him on and providing cuddles as necessary (and when not). Your daughter may have different physical needs, and your husband may have to take on more than his fair share at times, but you can still enjoy every day you have with her and do the really important thing: love her and make sure she knows it. That’s all that matters in the end. So please don’t worry about your children. Well, any more than any parent! As far as your husband goes, have you spoken to him about it all? It’s true that MS can lead to divorce, but it’s not always the non-MS person who wants it and there are also many perfectly happy, strong marriages despite MS. My husband and I have been together for nearly 32 years, married for nearly 26. We have had three near misses in that time, but pulled through in the end and are now very happy. None of those bad times were due to MS; in fact only one of the three happened after my diagnosis. My husband has had to do a lot for me over the years, especially the last few, but he doesn’t grudge a second of it. There is no reason to suspect that your husband won’t be just as wonderful IF the need arises. We don’t like to think of putting strain on people we love, but some of them simply don’t see it that way! As far as work goes, it is very difficult to see how life will be without it when it is a strong part of our identity. The truth is that it is amazing what we can adapt to. And there are loads of things that can replace work IF and when that needs to happen. That ‘IF’ is important - it’s true that a lot of people with MS don’t work, but many do and some work right through to normal retirement age (and some of them in full-time jobs). I know that this wont have put your mind completely at rest, but I hope it’s helped a wee bit. Things will be OK. Life goes on and, somehow or other, we muddle through - with any luck having a lot of enjoyment en route. Karen x

Hi Ali, I also want to send you my support and a hug or 2.

I think this site is wonderful at helping us with our darkest moods…there are times when we think we`ll never cope with anymore problems.

yet somehow we do. the human spirit can really surprise us at what can be achieved.

And as you say, you still have your little girl, when the oddds were against that happening.

Our children are the most precious thing we`ll ever have.

Enjoy your`s and dont forget the old man too!

much luv, Pollyxxx

Hi Ali, Everyone has given you such great advice, so I won’t add to that. Just wanted to lend my support. You have so much to deal with - just take things day-by-day and you will get through. What matters is that you support your children and your husband and that your husband supports you all too. Keep going and things will sort themselves out. Good times will happen along the way too! You’ve got this far - it’s all just another step forward. Teresa xx

Hi all

Thank you for all your comfort, I suppose I have just been wallowing a bit. I know it may not be the end of the world but at the moment those small things like kicking a football about matter. I think we have been pushed to the edge of our coping envelope, and also concentrating on being grateful for the small everyday things (partly including our own health) that it just seems unbearable to give up even a little bit of anything at the moment, does that make sense?

I suppose its also the worry about the future- my husband is 16 years older than me (though you would never guess it) so I was supposed to be the “young” healthy one in years to come!

I suppose also its that with our daughter I can definitely say we are better people as a result of having her, not just more loving but wiser and stronger too. We have fought her corner with the medics who gave us the choice about whether to bother with a life saving operation, and whether we would want to resuscitate her if she needed it (and why oh why wouldnt we?), and in doing so we have questioned big life and death issues. And even shifted views and paradigms amongst the medical world. But I am not ready for more hard times, I just needed a bit of calm sunshine for a while! Sorry. I know I should be grateful that so much could be worse but at the moment I am just feeling a bit overwhelmed.

xx

I don’t believe that anyone in your situation would feel any different. Even Pollyanna would find it tough to raise a smile :frowning: When we say encouraging things, it’s about what will be, not what is. Now sucks. But it will get better. You will have moments of calm sunshine and hopefully some of them will join up to become days, weeks and maybe even months or years. We none of us have your unique situation, but some us also have a multitude of challenges as well as MS. We got through those scary early years, learned to adapt and enjoy life. You will too. Take it one day at a time and don’t dare beat yourself up for 1) getting ill or 2) feeling down/scared/angry/anything or 3) not being grateful it isn’t worse! I strongly recommend asking your GP about seeing a counsellor. It is a huge relief to be able to let it all out to someone who listens, understands, won’t judge you and who you can’t scare or worry. Kx

Hi again

Karen, thanks for your wise words - I did ask my GP about a counsellor but I think it got lost somewhere so must follow it up. Had a nice counsellor who I saw probably 6-8 times over the first 2 years (and best of all knew I could if I needed to, which meant I needed to less) but was discharged as she is funded for neonatal counselling only. The NHS moves in mysterious ways - I get the whole budget thing but slightly frustrating.

I am back a bit more in balance again today. Great comment seen on a fridge magnet “life isnt about waiting for the storm to pass, its about learning to dance in the rain”. I know all this really, just my emotions havent caught up with my head yet!

On a more practical note my neurology appointment is on Monday afternoon, and I just wondered if there were any really good questions that anyone would recommend? I am writing a list - its a bit route A, route B (ie if there is a meningioma questions and if there isnt), and my husband is coming with me.

Also, is there anything at all that is worth trying which may help? More exercise/ more rest/ vitamins etc??

The other thing is, I have been dredging back to think of any linked events previously and there are only two - a slightly dizzy patch just before Christmas (which I put down to extreme tiredness at the time as lovely miracle daughter had made 2am her bedtime!!), and a weird numbness in one or two toes that happened about 20 years ago(!) - I cant remember much about it apart from the Dr saying it was probably a virus that had attacked a nerve. Are these worth mentioning or totally spurious/ so long ago not to be remotely linked?).

Thanks again to everyone who has posted, it helps to have somewhere to come and know people understand xx

Re historical stuff, just tell it like you told it here. It may be nothing, but let the neuro decide. As far as questions go, if it’s MS or probable MS, make sure to ask for an MS nurse’s contact details. Also ask about DMDs. Whatever the diagnosis is, ask for help with any symptoms you are struggling with. Also ask the neuro what you can do to help yourself. If it’s MS, then vitamin D3 supplements are usually recommended these days (4-5,000iu a day typically), keeping fit and supple, eating a healthy, balanced diet and not smoking. Good sleep hygiene is sensible too, but especially important when fatigue is an issue. Quite a lot of MSers are low in vitamin B12 so you could consider taking that too. I’m glad that you’re feeling a bit better now, but do be prepared for more of the same - it takes a while before the good days outnumber the bad ones :frowning: Good luck on Monday. Kx

Thank you :slight_smile:

Will post again after Monday x