Struggling and feel confused

General
1

hope everyone is doing as well as possible, have been away an not online too much.

My husband pointed out to me that I seem angry a lot, not like me. more than anything I feel frustrated - by my doctor who I fired with out a new one in place, and by myself for many reasons.

This new me isn't being easily accepted by family or others. or me either. Faced health challenges for a long time, but this is so scary. I don't have a concrete diagnosis yet. knowledge is power, and the unknown is much tougher to deal with.

I miss being able to have facial expressions. I miss the intelligent well spoken capable woman I was. I want my independence back. Being middle aged is fine, but feeling useless? No.

by no means am I having a pity party. I want to work through it all, and discover how to live well despite this. For now, am almost completely home bound. it's an adjustment that isn't easy. My autoimmune issues, spine, and permanent nerve damage are easy by comparison.

I read through posts, and see others who are positive and productive. That's where I wish to be. I know it takes one step at a time. I'm clueless where to step.

Thanks, may peace and love be with you.

2

Same here we all have highs (not very many) and lows (too many) but you will find your own way to cope eventualy

Just rember you are not alone (and yes life is poo but it is life

3

It's very hard sometimes, I know I struggled a lot when I stopped working, I felt I was burdening my husband. We've talked that out and I talked to my counsellor about it, so communicating to people about how you are feeling is good to get off your chest. I take antidepressants too.
Also, and I think Rose who is on here too has posted about this, I have changed my diet and found some yoga/meditations that suit me - no downward dog for me I'd be vomiting in no time!! I'm on day 78 (yes I'm keeping a food diary) of the GAPS diet, so if I have any preservatives in my food it would be accidental. I noticed a change in headaches, moods, and aches and pains around the 40 day mark. I started meditating on Boxing Day for just 15 minutes and now do some yoga breathing exercises for depression, anxiety and general relaxation. Meditation can be difficult at first because your mind wanders, but now I can't wait for a time in the day to do it as it relieves my brain and body from the worry. I can now also sit on the floor and actually sit up straight for about two minutes now, so the muscles in my back seem to be getting stronger.
I think for me it's been about finding activities/getting medication/changing my food that support my health, the act of this for me helps me with a sense of purpose.

4

I'm so sorry to hear how difficult things are for you. My husband has SCA2 and was in a similar place a year ago, needing anti depressants and not knowing where to turn, what to do, feeling useless, helpless and with no future. He started going to a wonderful SGI Buddhist Centre (the SGI is important as there are many types of Buddhism) where he started chanting. He has met amazing local people, all fun, all sorts of ages, types, professions, homemakers. He can go to the centre and also meets with very local members (a few streets around us) regularly.

He chants at home twice per day - some people only chant once in a while but he benefits hugely from a lot of chanting. It gives him something to do, has allowed him to connect to himself and also open up to incredible new thoughts and ways of living. He still struggles but it's easier to accept and get through the darker moments. He also laughs and feels much happier and fulfilled. Speech is easier, perhaps due to using his vocal chords (though don't overdo it and strain them!) He has new energy and it's made a huge difference to both him and the whole family.

If you don't already have a spiritual practice then do have a look at www.sgi-uk.org with an open mind. There's a great book The Buddha, Geoff and Me that was the start of the journey, a very easy and entertaining read. It is a beautiful practice, very relaxed, people do as much or little as they want to and you can chant for anything you'd like, including material things. It has brought incredible peace, acceptance, positivity and wellbeing to him and many others. He came off the anti depressants after 4 months!

I hope this helps - I'm suggesting this as I've seen the benefits but I'm sure other spiritual practice will also be very helpful.

5

Hi Perplexed!
With the ups and downs of living with certain conditions I’m not surprised you’re angry, frustrated and
Perplexed! I suppose if a person’s housebound and possibly mostly chair bound, trying to keep the
mind occupied is the most helpful thing a person can do. Definitely not easy when you have trouble
with concentration but sometimes you have to meet a challenge straight on. People here are always
ready to give support and encouragement, I hope it helps. xB

6

Hi,
I understand your feelings perfectly and I am going through the same. I am home bound for the last 5 months and doing my best to retain the remaining faculties. I am on CERAGEM therapy and feel much better with pain. I use a walker indoors and mobility scooter for my kitchen. Getting inside the car is a huge problem and I want to come out of this soon. I try to maintain a positive attitude and fight. Stay strong, and do not give up hope.

7

I have also been dealing with anger and it is very unlike me. About six months ago, I fired my doc of 20 yrs and my neuro, for a very good reason. All the time when I saw my doc he would say nothings wrong, I would say xyz is wrong and he would tell me it’s nothing. The last time I saw him he said it’s all in your head you need to go to your psych. I told him yes doc I do have mental health issues but I know the difference between mental health and physical health, I have never gone back.
I now have a new doc and neuro and this has been a great change they listen and have started towards the right diagnoses, symptoms match.
Anger used correctly can help make changes. Just direct it to who and what you are really upset about(try not to take it out on your partner). Unresolved anger left for long periods can turn to depression, so best to resolve.
Best wishes jaime

8

I go through my up and downs too, don't let it get to you. You have the right to feel anyway you want, but if you don't want to take it out on your love ones. Which I'm sure you don't. Then hears what i do, I find something to do were. I drown out the outside world. Whether its reading a book or going in a different room to watch a movie. Sometimes its a good thing just to take sometime for yourself to think or just to be mad, but this way your not taking it out on the ones you love. Since I found this site it really seems to help just talking to people who know what I am going through. I try to come on here everyday, and always remember your not alone.

9

My Elphaba/Wicked Witch Side*

My Pollyanna Side

Skeeter has turned out to be a good listener(listens to whatever I say) and a good party guest (goes wherever I say).

I once had a friend tell me how people who were always positive in the face of adversity pissed her off. I completely agree. It helps me to stay mostly positive by having the occasional pity party. I aim to balance my "Pollyanna" side with my "Elphaba/Wicked Witch" side.

Some people believe any negativity is to be avoided, or a downward, irreversible spiral into depression will follow. Maybe, but like crying, it's more energy–sparing for me to welcome some self–pity and wallow away. I often feel better, usually gain some insight, and can then move on. "Pity–party" may be descriptive, but I have a better time if Skeeter and I are the only guests. She never says a word about my splotchy face, swollen eyes, and snotty nose. So don't hold your breath for an invitation–it's not coming.

This is my favorite phone screensaver. Not that 80% of people are happy you have problems...just glad they're not having them. I'd amend the screensaver to "Don’t tell your problems to EVERYone...", but I think it's important when you're in the pit, to have someone to talk to, who can watch caringly from the edge without climbing down to join you. I may want an ear, but rarely company. Neither do I care whose pit is deeper. I do realize I'm not a recently widowed woman with seven children to feed, no safe water, living in a tent in the winter, on the border with Syria. Having Ataxia has taught me that there is always someone with a greater or lesser loss, and yet, even knowing that doesn't help.

You know the saying, “I cried because I had no shoes until I saw a man with no feet”? Well, I’d still cry about not having shoes.

*Elphaba is a fictional character in Wicked: The Life and Times of the Wicked Witch of the West by Gregory Maguire, as well as in the Broadway adaptation, Wicked. In the original L. Frank Baum book The Wonderful Wizard of Oz, the Wicked Witch of the West is unnamed and little is explained about her life. Elphaba is modeled after the Witch portrayed by Margaret Hamilton in the classic 1939 film The Wizard of Oz: Green-skinned, clad entirely in black, and wearing a tall peaked hat. Maguire formulated the name "Elphaba" out of L. Frank Baum's name, taking the phonetic pronunciation of his initials: hence, L.F.B became El-pha-ba.

10

Dear Perplexed, I know how you feel, I also have a tremendous amount of nerve damage and pain, all over there are days I cannot lift my arms or my left side which is affected drag my leg , I have to be homebound also I read where some can exercise and ride bikes and still go to work and I too feel so left out . I do have good days where I go out to church, but I cannot go shopping or be in a crowd because if someone gets too close I am afraid I will fall, which I have. I tried to take up crochet but that lasted a few weeks so now I do loom knitting it is so easy , I like to read what I am trying to say is we have to change and change is hard especially since we were so productive, I try to do things to keep my brain active , I get upset too and depression comes on sometimes . Find something that you can do to make yourself feel good . Things all work out in time.

11

Hi Perplexed

I feel the same.I would love to be positive but struggle to get there.

12

Dear Perplexed, just reading your post is making me cry now, (SCA has made me a cry baby), this support group has saved me from myself. Knowing others are struggling too help me to understand and accept my illness. I have a strong faith in God and believe that if he allowed this illness upon me he will certainly give me the grace that is needed to cope with it. The word of God promised he would put no more on you than you can bear. I prepared taxes at H&R Block and getting out the house every day is truly a blessing. So, perplexed put on your big girl panties and find whatever it takes to give you that hope and peace that is inside of you. We all are afraid of what's to come, so let's take each day and live the very best we can.

13

That's great to hear about your husband, the yoga and meditation I've been doing also involve mantra or chanting, definitely something in it!!

krissy said:

I'm so sorry to hear how difficult things are for you. My husband has SCA2 and was in a similar place a year ago, needing anti depressants and not knowing where to turn, what to do, feeling useless, helpless and with no future. He started going to a wonderful SGI Buddhist Centre (the SGI is important as there are many types of Buddhism) where he started chanting. He has met amazing local people, all fun, all sorts of ages, types, professions, homemakers. He can go to the centre and also meets with very local members (a few streets around us) regularly.

He chants at home twice per day - some people only chant once in a while but he benefits hugely from a lot of chanting. It gives him something to do, has allowed him to connect to himself and also open up to incredible new thoughts and ways of living. He still struggles but it's easier to accept and get through the darker moments. He also laughs and feels much happier and fulfilled. Speech is easier, perhaps due to using his vocal chords (though don't overdo it and strain them!) He has new energy and it's made a huge difference to both him and the whole family.

If you don't already have a spiritual practice then do have a look at www.sgi-uk.org with an open mind. There's a great book The Buddha, Geoff and Me that was the start of the journey, a very easy and entertaining read. It is a beautiful practice, very relaxed, people do as much or little as they want to and you can chant for anything you'd like, including material things. It has brought incredible peace, acceptance, positivity and wellbeing to him and many others. He came off the anti depressants after 4 months!

I hope this helps - I'm suggesting this as I've seen the benefits but I'm sure other spiritual practice will also be very helpful.

14

Hello!

I was diagnosed 13ish years ago and found myself (relatively early in my SCAness) getting really angry and mean with my family. The unknown had me reeling I guess. I saw how well Effexor XR worked in my mom's system that I decided to try it.

To my surprise, it has great affect on my nerve pain. I lost lots of weight when I started on it too.

In just the last five or so years my ataxia has really progressed.

I pray, meditate, read, engage in making and drinking matcha tea.......anywhere you can find perspective helps

I'm a mom and a new step-mom. Thank God for my children!

Good luck and God bless!

15

Believe me when I say you’re not alone. It took me ages before I’d admit I had ‘anger issues’! Talk to your neighbours and friends about finding a supportive and understanding GP. Then, talk to him/her, cos they really can help. I’m now on anti-depressants which DO work! I also went for counselling and relaxation/meditation classes. It made me feel better, talking to someone, and the relaxation classes really helped. Don’t suffer-you’re not alone xxxx

16

Hi Perplexed,
I hope you soon feel strong enough to work with your DVDs. I used to occupy myself with
various craft projects but gradually they tailed off one by one. Recently I’ve been able to
tackle basic knitting and crochet again, it was a challenge holding needles and counting
stitches, not to mention trying to concentrate and follow a pattern! The feeling of self worth
I had afterwards was something I hadn’t experienced for a long time.

It’s not easy focussing your mind on anything when the frustration of this condition means
it’s never far from your thoughts. But, try anything you can to help relax, and I agree with
you, acceptance doesn’t mean you’re giving up! xB

17

My Elphaba/Wicked Witch Side*

My Pollyanna Side

Skeeter has turned out to be a good listener(listens to whatever I say) and a good party guest (goes wherever I say).

I once had a friend tell me how people who were always positive in the face of adversity pissed her off. I completely agree. It helps me to stay mostly positive by having the occasional pity party. I aim to balance my "Pollyanna" side with my "Elphaba/Wicked Witch" side.

Some people believe any negativity is to be avoided, or a downward, irreversible spiral into depression will follow. Maybe, but like crying, it's more energy–sparing for me to welcome some self–pity and wallow away. I often feel better, usually gain some insight, and can then move on. "Pity–party" may be descriptive, but I have a better time if Skeeter and I are the only guests. She never says a word about my splotchy face, swollen eyes, and snotty nose. So don't hold your breath for an invitation–it's not coming.

This is my favorite phone screensaver. Not that 80% of people are happy you have problems...just glad they're not having them. I'd amend the screensaver to "Don’t tell your problems to EVERYone...", but I think it's important when you're in the pit, to have someone to talk to, who can watch caringly from the edge without climbing down to join you. I may want an ear, but rarely company. Neither do I care whose pit is deeper. I do realize I'm not a recently widowed woman with seven children to feed, no safe water, living in a tent in the winter, on the border with Syria. Having Ataxia has taught me that there is always someone with a greater or lesser loss, and yet, even knowing that doesn't help.

You know the saying, “I cried because I had no shoes until I saw a man with no feet”? Well, I’d still cry about not having shoes.

*Elphaba is a fictional character in Wicked: The Life and Times of the Wicked Witch of the West by Gregory Maguire, as well as in the Broadway adaptation, Wicked. In the original L. Frank Baum book The Wonderful Wizard of Oz, the Wicked Witch of the West is unnamed and little is explained about her life. Elphaba is modeled after the Witch portrayed by Margaret Hamilton in the classic 1939 film The Wizard of Oz: Green-skinned, clad entirely in black, and wearing a tall peaked hat. Maguire formulated the name "Elphaba" out of L. Frank Baum's name, taking the phonetic pronunciation of his initials: hence, L.F.B became El-pha-ba.

18

I understand that. It's always hard to communicate our frustrations to loved ones without creating ripples and half the time it never really feels like the message gets across anyway - but all we can do is notice it, address it and watch out for everyone's feelings sometimes more than we care to in the circumstances. I suppose just because we're angry with the situation and all the little things that happen every day, doesn't mean we should let it affect those around us but I understand the fear and frustration with not knowing, too. It just comes down to having good days and bad ones, and we're all allowed them but in my case anyway, I'm angry so much more that I have to be so mindful of other people now and it's worth stopping and taking a breath first, and biting back that one remark and so on. At the very real risk of sounding preachy (for shame!) I'll stop there, but feel free to come and have a chat if you have something on your mind/something's annoying you, maybe it might take some pressure off! P.S, you'll probably feel a bit better with some exercise that's safe for you and under your control. That's one of the only things so far that's made me feel any better - feeling like I'm still in control of how this will play out! Sorry you're feeling down! x