Hi all. Been very quiet for a while, I'm feeling my depression is rearing its ugly head again and to make it worse I fell over Christmas and cracked a rib then last week I fell straight on my face/nose after tripping over my feet. I now look like Rocky with bruising, a black eye and feels like I've broken my nose or damaged my septum. Very, very painful.
Is there no end to this misery ?????
Need cheering up big time. 😓😓😓😓
Oh my goodness, you have really been through it recently. But from your post sounds like you haven't lost your sense of humour!
The pain might take a while to go away, BUT IT WILL. Having a bad fall knocks your confidence but you have to 'get back on the horse'. I know this is easy to say but you owe it to yourself to do it. Depression is horrible and makes dealing with ataxia much harder. Try not to get into a downward spiral, it is so much harder to get out of.
When I am feeling low, particularly after a bad fall, I try to do something that Is likely to make me feel better and most importantly make me smile. This could be watching an episode of 'Mrs Brown's Boys' which I think is hilarious and rarely fails to put me in hysterics (maybe not the best idea if you have hurt your ribs!) or listening to music. My 3 favourite songs for such a situation are 'Always look on the Bright Side of Life', 'I am What I Am' and 'Spread your wings' by Queen. None of these require much thinking which is a plus! Alternatively I bash out a song on Singstar on the Playstation 2. Never fails!
What are the things that put a smile on your face?
Harriet
Thank you.
Not much makes me smile at the moment I'm afraid, I recently lost my job after many years which has hurt me very badly as I worked with people with disabilities and I feel very let down by the company and especially by some people that I stupidly thought were friends at the very least but it's like I've been excommunicated and I'm so very bored. I have a good brain with lots of knowledge and experience however I'm afraid to drive and my mobility isn't too good so getting another similar job is out of the question. I've applied for, and been offered a few interviews however, on reflection, I know I'm unable to fill a similar role and once you admit you have a disability and mobility problems then it's not possible.
My husband is such a sweetie but he wraps me in cotton wool and doesn't "force me" to do anything so when I feel like this he lets me "rest" and I take advantage of that and do nothing.
I'm letting this illness "win" because although I know that I must exercise, live healthily, not drink, find interests etc, I have no motivation at all. I've put on weight which has made my mood very low but again, no motivation to do anything about it.
Things like music which I used to have a great interest in don't have that pull anymore, even my children treat me differently and my family live very far away so I don't get to see them much. My Mum has SCA too however, she's from an age when you don't really talk about illness especially with my Dad so that's difficult too, kinda pull yourself together "for the sake of the children", even when I've been in hospital with depression it's so very taboo so no empathy there I'm afraid.
Even though I've been diagnose for nearly 4 years, I still can't accept this and I'm very angry and still grieving for the life I had, things I wanted to do, adventures we were going to go on when we retire but now it's all gone. I know people say, it's ok, you just have to do it differently or do something else but I don't want to, my choices have been taken away along with my life and the falls are getting more frequent and intense so that doesn't help. I love my husband very much but he doesn't leave me on my own so 24/7 is hard and for the past 2 years, I have no sex drive which again, is another thing Ataxia has taken from me.
I am in such despair and so frightened that the depression is going to come back again. Sorry to whinge I know we're all in the same boat. I just want to jump off ;-(
My grandsons, every time.
Our 2 year old when he asks , ' Wheres my 'torcher ' ? ( torch )
or when asked what he would like to drink he will ask for ' oddinge ' (orange)
our elder grandson would ask for a glass of 'orryna' ( orange )
Priceless ! I'm smiling as I type.
Andy
Had another face fall last night
Black eye, cut eyelid and eyebrow
Fed up 😣😣😣
Sounds like me at the moment. All that I can say is think as positive as you can. Easier said than done, I know.....
My way of dealing with feeling down (husband with a lot of physical disability and a son, diagnosed but, as yet symptom free, apart from his eyes jumping about!) Is "The Wardrobe" - mine is a really big one lol. So when feeling sorry for myself, I allow 15 mins of wallowing, then put the worries back in the Wardrobe for 45 mins. Every day I reduce the time allowed to wallow. After a coffee, I get up and do something active - well I say active, but after 8 hip replacements this terminology leaves a lot to be desired 😀😉😀😉😀.
And I treat myself to various things I love doing, puzzles, internet and hobbies, when I have reduced the Wardrobe time. We all have different ways of dealing with sad days. But it does pass, and tomorrow is another fresh start. Be kind to yourself as you would be to a friend.
Sending very best wishes. 🍵🍵🍵🍰🌸🌼🌸
Thank you for your kind words. I want to do so much more with my life. I lost my job of many years working with people with learning disabilities which was my life and now it's all gone, I have so much more to give, so much knowledge and experience gone to waste. I'm just so very angry.
I will try your idea thank you xx
If you think that you've broken your nose, have it reset at any emergency room. Even a small fracture can create cosmetic and other issues. Feel better and be careful. N
Hi Bevvick. If I wasn't so useless I would try and cheer you up but I would probably make matters worse. The good news is that on here everybody is thinking about you and rooting for you.
Sounds as if you need a big hug from all of usl. I had to go to a wedding with a black eye and stitches after a bad fall. Ihadn't been diagnosed and everyone thought I was drunk! Be kind to yourself -it could have been worse - at least you didn't break a leg or an ankle. Lots of hugs and very best wishes x Chris
Thanks for that Crisal. I'm just worried that people will think my poor husband is doing it bless him. I carry a card that says " I'm not drunk, I have Ataxia" in case of unforeseen circumstances. Thankfully I've never had to use it. Maybe I should have a t-shirt made saying it or " he hasn't hit me I have Ataxia". What'd y'all think ?? Lol xx
Thanks for the hug bless you xx
I think that the very fact that you have been sufficiently brave and open to share your emotions with us is a very positive sign, even though it may not seem so to you. You are articulate and have voiced the feelings which most of us have at some time. Thank you for that: reading your post has been helpful to me. If I may offer any advice, it will be to set yourself a few small goals every day and give yourself some treats. Love and best wishes. x
Hi Margaretm
Thank you for being so kind. I'm afraid I tend to say it like it is. I'll try to take all advice on board from everyone
Many thanks xxx
hi Bavvick 1964=p
Hello Bevvick 1964
You have taken the first big step in putting your feelings into print We all know how you are thinking but you seem to have had a really bad time and it can only get better(like the weather!!!) When I feel down I read the papers and that really gets me down!!!!!!!only joking!!! It actually helps me see all the people in the world who are suffering and I tend to get more positive
This website is a big help and long may it continue
My wife tends to worry about me a lot (Bless her) but I have now got her to go out without me and we each have a cheap mobile phone to keep in touch
Its a doro phione and has quick access to three numbers of people who could help you in an emergency
Very best wishes and use that sense of humor which i detect in your letter
Much love Ted xxx
Thank you Ted. Yes I do have a rather warped sense of humour, just can't seem to find it at the moment. Maybe I should write a book !!!!
Hi there. How are you ?
Dear Bevvick 1954, I'm so sorry for your falls and distress over your ataxia!!! Everyones advice is so good! I was diagnosed with ataxia twelve years ago, although I had very minor symptoms starting about eight years before. Before I was diagnosed, I was very active/athletic, so it's hard to wrap my head around not being able to do all the things I used to do. I had to retire from my job as a social worker (28 years) eight years ago due to ataxia symptoms progressing (long before I wanted to). But this post isn't about me...,ha! I just wanted to tell you a bit about my situation and ask if you use any assisted devices? I started using a cane (I live in the US and this is what we call a walking stick) five years ago to prevent falls, as they were increasing. I also cracked a rib, hairline fractured my pelvis and split the back of my head open, requiring nine staples, and those were there separate falls. I'm also going to get lighter-weight rollator to use inside the house, as I have one (more heavy-duty) I keep in my SUV for pleasure walking outdoors. Try to exercise a bit each day for strength and balance
(especially core muscles), as it will help you feel better. You can hold onto something sturdy if you're standing, sit in a chair or lie on the floor. Google exercises for strength and balance. I do know having ataxia is frustrating and challenging. Early on, I saw a psychologist for counseling as I was having a difficult time with acceptance. I also take an anti-deppresant medication which works for me! Occasionally I have mini-pity parties but they're short lived, as I count my blessings and think of all I can still do, not what a can't. I find if I think about my ataxia too much, I bring myself down big-time, ignorance truly is bliss for me...,ha! Just do the best you can each day, find things you can do that you enjoy (I have adult coloring books that are very relaxing for me). You may want to consider doing some volunteer work, as you enjoy working with others! I'll share one of my favorite sayings with you, "a woman is like a tea bag, as she never knows how strong she can be until she gets into hot water". Hope that made you laugh! My best to you...,;o)
Also, Nigeirhealth, member of this site has a great site, "ataxiafightsback" that you may want to look at. He posted many good exercises, as well as other helpful advice on his site...
I had a look and joined the group thanks x
Thinking of you. I can't offer advice. New to the ataxia world. Have asked for help via antidepressant to cope with the grieving of the loss of athletic lifestyle. It has been helped me to focus on some new goals for now. 👍
I Know how you feel as I had a seizure just before Xmas I don't know any thing about it but I woke in agony on the floor I spent two weeks in hospital with broken ribs and a fracture of my spine and bruises all over my body I am now wearing a back brace or a instrument of torture lol 'not funny' I know I hope you are feeling better and your nose too.
Hi everyone who is feeling low. Like Harriet, I grab a 'Mrs Brown's Boys' DVD when in despair and before I know it, I am laughing my head off. Not everyone's cup of tea, because it is so naughty, but who cares - it also works for me! There are other things that have helped me: writing down the things I am grateful for, e.g. 'I have a comfortable roof over my head', 'I have a loving family', 'I do not live in Syria', etc, etc. Cerebellar Ataxia is a cruel disease, but the only way forward is to learn to accept it. When I look back into the past and think about all the things I used to be able to do, I get a panic attack and force myself to concentrate on TODAY. Today is history tomorrow, so we must not waste this precious time by letting negative thoughts run riot. With a bit of practice it can be done. Good luck to everyone who is feeling low. Also, think of the Poet Shelley's words: 'If Winter Comes, Can Spring Be Far Behind'..... (very appropriate right now....).
Take care and best wishes from Oniki
Thanks to all of you for all the support and advice. I know that I should consider myself lucky I own my home, have 3 strapping boys and a husband that lives and takes care of me so much. I feel very selfish most of the time as I've put them through some very upsetting things and they've "lost" their Mum so to speak
I suffer badly with depression and I drink too much which doesn't help so it can be very difficult for them
I got taken to A&E yesterday as I wouldn't wake up and I've now been diagnosed with Post Concussion Syndrome following my fall which could last up to 6 months. Something else to cope with !!!
I'll just have to battle on. Xx
In the meantime, last night I broke all my rules. I got out of bed fast, at around midnight, in a dark room, didnt think, a wham went straight into a bookcase. Now as last night, my upper left arm, above the elbow, is super-sore. Does this mean I fractured it? Strange because it only hurts (alot) in certain positions. Going to a GP at 445 in the afternoon. I hope bevvick is feeling better!
Oh you poor thing, did you go to GP ?
Unfortunately I fell on my face again last night and cut my eyelid and have a huge black eye, bruised leg, arm etc. Getting very very fed up with falling and I'm slowly losing my confidence with going out.
I want to go to New Orleans in November and to Graceland on a coach tour with a friend. It's on my bucket list so I'm desperate to go but do I ? Frightened so much of falling that it's stopping me doing things. Ataxia 1 bevvick 0
It's winning again !!!!!!!
MSA getting worse
Deliveries
Fall
