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Can't get out of this black hole....

Hi, Not posted for a while…still getting used to the new format. Firstly I want to apologize for moaning cos I know I have so much to be thankful for. I was dx’d in 2007, out of the blue. no idea, dx’d within 6 months of going to docs with a numb bum! Since then I’ve been getting on with my ‘new’ life. My hubby is fantastic and I love him lots. My 10yr old daughter is an absolute star and I couldn’t ask for more. It’s the guilt. Why should my daughter have to ‘cope’ with mummy falling over, sleeping all the time, wetting herself etc etc. I shield her as much as possible but she’s not daft. My hubby’s now on anti depressants as a direct result of having to ‘deal’ with me (my words not his)I don’t feel like me anymore. I’m not the person I was and I try and look forward but I can’t help missing the old me. It’s been a really rough 4 months. Relapses, allergic reactions to meds and now I’m on no dmd’s. I’m scared. I’m sorry for being a wimp. I’ve seen my GP and he’s upped the happy pills. I can usually deal with all this ms crap but I’m really struggling at the mo. I appear to have lost my sense of humour. I just feel unable to cope anymore. Sorry for rambling x

thats what we are here for you let off steam if thats what it takes xxx

Hey Nice to see you back! Sorry you’re having such a hard time at the moment. I guess these things go in cycles depending on symptoms and there’s nothing wrong with a good moan when you’re at your lowest. Your family sounds very supportive and the disease isn’t your fault so try not feel guilty. I know that’s not the most helpful advice but thinking of you and hope your health picks up soon Aileen

Thanks Aileen, I lost my phone so I’ve lost all my contacts too. If you txt me just say who you are lol! Hx

Strange how we can deal (more or less) with the impact of MS on us personally, but lose it when we see how it affects the people we love. It’s unfair we have MS in the first place, but unfair squared when MS leaks out and does harm to others. First thing to remember: this is NOT YOUR FAULT. MS is bad news for the whole family for a load of reasons - no point pretending it isn’t. And it is particularly distressing for us when we want to protect people, feel unable to, and feel so helpless. But people of all sizes are are remarkably resilient, and can learn to deal with bad stuff and assimilate it into a good life - that applies to you and also to your husband and child. Don’t underestimate your own, or other people’s ability to deal with stuff. Not quickly, maybe, and not completely, but dealing with it nevertheless It is tough that you are having such a bad spell with the MS - that makes it particularly difficult to imagine a way through all this, and there probably isn’t much to be gained by trying to ‘solve’ problems that are just not within your control. It seems to me that the people around you are likely to be taking their lead from you - so getting yourself to a reasonably healthy and stable state is the priority here. I have benefited very much in the past from counselling - it was useful to me when my coping strategies, which had served me well, started to break down and not work any more. You might want to consider whether you have reached a point on the journey of coming to terms with MS when some professional input would help you. If you feel calmer and less overwhelmed by it all, the chances are this will help those around you too. So, what I would suggest is that, to best help others, you turn your attention to yourself and see what can be done to get you to a calmer and happier place. (But please do not interpret this as me saying that you are making things worse for them by being distressed… Oh Hell, you know what I mean!). Good luck with it all. Alison x

My sympathies are with you, just now suffering from a useless right leg so will v soon go on to a heavy dose of steroids, this leg started dropping about 2 years ago, now its not working at all, just hoping that the steroids will sort it out, feel so scared…as you said, you feel protective of other ppl who you love and love you xx

Hi Sorry you’re finding things tough at the moment. The first thing I want to say is: stop apologising! There’s a myth that we should all be good plucky Brits, able to always maintain a stiff upper lip and never display any emotion (certainly not ‘negative’ emotion), and that any failure to do so means we are a failure as a person and owe the whole world an apology. Rubbish! If you’re tempted to tell yourself that you’re not coping well, then that’s a lie. You have a serious neurological disease. Just look at the things you said you have to deal with. Anyone who was to experience that and carry on like nothing’s happened is just in denial. It can take years to process what’s happening to us, and we need to grieve the life that we no longer have (do a google search for ‘stages of grief’, and you might find something you (and your husband) can relate to). It’s normal to feel pain at what you’ve lost and how this is affecting your family. And to be honest I don’t think that pain will ever go away. But, I think it is possible to grow bigger than it. Keep talking with your fella, friends and us about how you’re feeling. Bottling it up probably won’t help. And find those things that bring you life, that energise you and feel good for your soul, and make a point to keep choosing them. Take care Dan

Thankyou all for your replies. I’d reply personally but I haven’t quite worked that out yet! Heather xxx

tiggywinkle wrote:

It’s the guilt. Why should my daughter have to ‘cope’ with mummy falling over, sleeping all the time, wetting herself etc etc. I shield her as much as possible but she’s not daft. My hubby’s now on anti depressants as a direct result of having to ‘deal’ with me (my words not his)I don’t feel like me anymore. I’m not the person I was and I try and look forward but I can’t help missing the old me. It’s been a really rough 4 months. Relapses, allergic reactions to meds and now I’m on no dmd’s. I’m scared. I’m sorry for being a wimp. I’ve seen my GP and he’s upped the happy pills. I can usually deal with all this ms crap but I’m really struggling at the mo. I appear to have lost my sense of humour. I just feel unable to cope anymore. Sorry for rambling x

Many of us here, including me, know exactly where you are coming from. Many times I have wondered if my family would be better if I disappeared…I feel sure you have had similar thoughts. Thankfully I always come back to the same answer - NO. It would be much worse for them without me. I have been helped enormously by a couple of fantastic Neuropsychologists. It may seem scary to have proof that your thought processes are not what they were but it is liberating to know you are not mad, and that what you are feeling is justified. There are many happy pills out there. It could be that you haven’t yet found the right one. I am an old fashioned sort - I find Prozac to be immensely helpful. Another way I helped myself to feel a bit more in charge was to have a Power of Attorney drawn up to ensure my husband can deal with any of my affairs if I am not capable [during some relapses I couldn’t have told you my name let alone sign it]. I also wrote a living will saying under what circumstances I want no more help [in my case if I go totally ga-ga]. Then I sat my family down and told them what I had done. A copy is logged with my hospital notes as well as my husband and sister in law having copies. This may all sound ghoulish but it allowed ME to decide for myself. I then went and did a tandem parachute jump…I still remember my instructor saying ‘it’s a lovely day to die’ [jokingly] and I thought yes, it is, and I don’t have to worry about anyone thinking 'what would mum want us to do? There is nothing wrong with missing the old you. My husband and I often get out some old photographs to do the ‘remember when’ stuff, and always end up laughing when he says something like ‘if you could do that again bang goes your DLA’. You don’t say how old your daughter is. A number of years ago I met the son of Richard Cave, who founded the MS Society. I asked him what it was like to grow up with a mother with MS. he told me he didn’t really notice - he had a loving family home and his mother was just his mother. My own son was 15 at the time so I asked him how he felt. He looked at me as if I was daft and said ‘You’re my mum, what does MS have to do with that?’ He admitted that he was aware I wasn’t as capable of doing some of the more physical things his friends mums could but insisted that what we did do, and the quality of what we did, had given him a much better childhood than many of his friends had. He is now 24, my daughter 23 - they still feel the same. So you see it isn’t what you can’t do that will influence your daughter it is what you DO do. I don’t think I have ever written a post this long or so personal to myself - but you deserve to know that there is still help available, that when you meet an immovable obstacle you can still find a way round it, and that life with MS will always be different but always worth giving it your best shot. Take care, and be selfish at times - you deserve it. Liz

tiggywinkle wrote:

sleeping all the time, wetting herself etc etc. x

Modafinil tablets or Amantadine can help with fatigue and Botox injections in the bladder are an absolute wonder - completely life enhancing - you get to wear posh knickers again. Liz

Thankyou Liz. I did see a psychologist not long after dx…maybe I need referred back. Daughter is 10.She had just turned 6 when I was dx’d. SHe knows I have ms. And I answe questions as and when they arise. I know that my guilt is only put on there by myself. Can’t have the botox cos it would worsen the retention bit. I was lucky enough to be told I have urgency, frequency and retention. My bladder is a law unto itself! I’m on meds and ISC. I had a bad reaction to the fatigue drugs. I go to Local Hyperbaric Ozygen twice a week tho! I’m hoping the increased dosage of citalopram kicks in soon. Thanks again for your replies xx

If you can ISC then retention isn’t a problem with Botox - you already know when to do that so getting rid of the feelings of urgency and frequency would be great. Check it out again. No to the anti-fatigue drugs then try another tack. When my two were younger I would take them to school, do whatever I was capable of in the morning, go to bed between 12 and 1, first setting the clock for 3 to get me up to collect the kids. Even if I didn’t sleep I rested and was more able for homework and tea-time. I still go to bed most afternoons for a couple of hours [even with the Modafinil] so I can at least appear human when the OH gets home. Liz

Hi, we have daughter’s the same age ish! My daughter, and only child will be 10 in February. I was diagnosed a few years before she was born, so I guess she’s grown up with this illness. I don’t see it as a negative thing where SHE is concerned. I am unable to work and therefore I can pick her up everyday from school. We watch movies together ( I am so looking forward to the new Barbie Movie, NOT!) We play games. She’s an expert in most card games and we’re teaching her Bridge. She loves traditional games like Backgammon & Chess whilst also enjoying the Wii and computer stuff. What I’m trying to say is ‘every cloud’… Because I get tired and can’t walk for longer than about 15 minutes, we are able to spend time together, that alone is priceless. She assists me, and fetches things for me that I’ve left upstairs, with out too much moaning! Her teachers at school say she shows great empathy and understanding to kids in her class. I know she would never change me and loves me, however disabled I am. We can spend quality time with our daughter’s, for me I see that as a positive thing…

Thanks Fifi! I know you’re right. We have our friday night movie night…not into Barbie anymore Yaaaaay! I love spending time with her. I guess I’m still coming to terms with the fact I can’t do the sporty stuff with her now…but I do other stuff instead…I just have to keep telling myself that the ‘other’ stuff is just as important! We do make an amazing red velvet cake lol! Thanks again xx

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