Thanks Croix, I've missed you. I hope you are doing OK. I was glad I was able to help my dtr by babysitting as she really needed medical advice/ treatment at the time. Unfortunately I'm not good with babies. Most women are much better than me in that area.

The issue with the teeth is on hold as I can't face dealing with it ATM. I have a number of things I need to do but have put off due to other commitments & then feeling stressed & tired & unable to focus on things. I think I need to push myself so I can feel like I'm acheiving something rather than just making excuses & being lazy.

Hi Elizabeth,

Sometimes we are not able to do much of anything and we need to sit and rest for a while. Taking time out may actually help you have more energy and determination rather than pushing yourself all the time so I have discovered.

I make a list sometimes and consider what really needs to be done and what can wait.

Tick off the things you have achieved and congratulate your self for getting that far.

I find putting too much pressure on myself gets me to the point where I am about to implode or explode...neither option is very good!

Cheers from Dools

I printed my weekly planner today so I can mark things off. Hopefully this will help me focus on what matters most & helps me feel more in control by marking things off so I see what I've done even if it isn't as much as I wanted.

I find it hard getting the balance right of pushing enough to get things done so I feel successful rather than things just piling up. But pushing too hard as Dools said leads to disaster. Often leaving me too tired to cope

I thought I was managing a bit better although things have been very busy with lots of appointments & stress trying to organise NDIS funded services for my husband.

I notice I am clenching my teeth more & getting headaches & neck & shoulder pain which are all signs of being tense & anxious. Although I'm not really depressed I feel quite flat & little things can really upset me. For example some of my husband's appointments leave me feeling down & as if there is nothing to look forward to. I think it is the focus on what is wrong & how he's deteriorating which is difficult.

Winter has been hard as the cold really affects him limiting what we can do.

Today i rang the NDIS because of a problem we're having. I have rung multiple times & get told they will fix the problem. Today I was told that by the person answering the phone that she couldn't do anything because Ihave no right to provide information about my husband. She refused to allow him to give permission for me to provide the information which they keep losing. Since he is blind he couldn't read the information himself to give to her. I became really angry & lost my temper because I was so upset. I'm still feeling really upset & shakey hours after. I hate myself & feel like a failure because I can't control my temper, I can't help my husband because the system won't let me. I need to cook tea but I am struggling to motivate myself to do anything.

Dear Elizabeth~

Some people are born public servants (the children of Appleby) , and you sound as if you had the pleasure of interacting with one. Frankly if it was me I'd put in a snail-mail written complaint, and if it happens again then during the conversation insist on speaking with the supervisor.

Sometimes it is good to have a voluntary medical power of attorney (which can be withdrawn by the subject at any stage). Once the government department has been furnished a copy it adds an extra ounce of authority you can use to deal with them. Perhaps speak to your/your husband's GP? My partner uses one with success.

Don't cook tea, if there is a shop near by get fish and chips or something more gourmet if your taste buds (& purse) run that way.

Appointments that emphasize the unpleasant do take their toll and I suspect need to be promptly counteracted, do you share a particular sense of humor with your husband?

Croix

Thanks Croix, I have put in a written complaint via email. My husband wants me to complain to the DHS for discrimination due to his blindness. . He is upset that he can't access the money he's entitled to because he is blind & therefore unable to read out the bank account details himself. We have already filled in forms providing permission for me to act on his behalf twice but they have been lost or not processed. We provided the bank a/c details in person with my husband present but they won't accept them.

Today has been cold, rainy & miserable. I feel very unmotivated. I didn't sleep much last night because I was so churned up by what happened & my outburst of temper.

The way I'm feeling I don't feel like I deserve anything so even buying take away feels too self indulgent. Trying to think of something to do that he would enjoy seems too hard which just leaves me feel like a terrible wife.

Sorry I sound so negative.

Dear Elizabeth~

So have an indulgent take-out and eat it thinking how much you don't deserve it. Then throw the wrapper in the bin and think how much you don't deserve to not do the washing up (I think I got enough negatives in there)

C

Too Late I've already cooked tea although I did a very simple meal.

I think I need some of your warped sense of humour to get me going again.

Dear Elizabeth~

I agree that such pessimism does not really have a place, I do think though that any intelligent person would realize the when talking to NDIS, Centercare or similar government institution it is on thee cards things will only proceed in fits and jerks.

So I would think having a post-phone plan might be prudent. Having an activity on tap that takes the mind away and refreshes before thinking of the next bout. If you don't have some means of distraction that sort of thing can ruin your whole day (or even week)

What do you think?

Croix

Thanks Croix, Your idea of the post phone plan sounded good but then I tried to think of what I could do & how it would work & became stuck. On the day it was sunny & my husband wanted to weed the garden so I'd planned to help him. After the call I was so upset I couldn't be near anyone including my husband as I was so angry I couldn't trust myself. I don't know what I could do in the future to be better I know that sounds like I'm being negative & giving up but I really don't know how to change effectively.

I think being so busy with little time to have a break at the moment is making things worse.

I have been away for 5 days so unable to post. I've attempted posting lately but seem to loose the posts & then give up. I suspect my internet is the culprit but then I can't be bothered retrying!!!
I thought once my husband recovered after his illness in April/ may things would improve but I have felt very overwhelmed. Dealing with the NDIS has taken huge amounts of time & now we have it in place we have so many appointments to attend. Even though many of these are beneficial (eg the new physio is really good ) they all take time and then further follow up (eg now need to supervise the new exercise routine & try to fit it into our schedule) I had my sisters visit which while nice to see her it was very stressful fitting in with everyone's competing demands. My daughter had a new baby 6 weeks ago & has needed my help a few times including babysitting the new baby while she took her oldest son to hospital for tests. I'm not good with babies so I found that challenging.
My husband has really struggled this winter showing further progression of his disease particularly when cold. He wanted to go away so we chose somewhere warmer than home & while most of it was good with some nice walks & chance to explore new areas I arrived home exhausted from all the planning, driving, packing, unpacking etc. I did try to take some time to rest but obviously not enough, Today I burst into tears at church when someone asked how the trip was. My husband wants to go away next week but I'm currently feeling overwhelmed by all the appointments this week & other things I need to arrange eg car repair.
I need holidays to look forward to but when they are jammed together with so much else it feels like work. I don't like to complain about it to my husband because I don't want him feeling bad because its not his fault that he is so reliant on me. I feel like I'm failing him.

Sorry not sure if this makes sense

Dear Elizabeth~

I'm please you have sorted the NDIS, a major triumph.

You sound very pressured, and your whole post is taken up with arrangements for you husband. I quite believe you when you say they are beneficial, and it is obvious you do a huge amount. When not doing that you are trying for others, in this case babysitting.

To break down crying is no surprise, the demands you make on yourself are pretty total. I may have mentioned this before but will repeat it any way (walruses have limited mental processes:) I think you are wrong to protect your husband from the plain truth that his condition affects both of you deeply. As an adult, even in such trying circumstances the possibility of lending support may well be a source of satisfaction and pride. And to do that he does need to know how you really are.

A few times in my life, including my first partner's long illness and final passing, another time when an offspring was overwhelmed with grief, and other times too I've been helpless to affect circumstances, and felt powerless and frustrated at the time, but now know how much my efforts meant. I am grateful to have had those opportunities.

Croix

Dear Elizabeth~

Dealing with my late wife's needs did make it harder for me, no doubt about it. As a responsible adult I would expect it to, and one way to show care is to shoulder some of the harder parts. So while I understand exactly what you are saying, and in a short term situation might even think it was the right way to go, in a permanent situation like this load sharing is essential.

You are as worthy of beng looked after as anyone and have limits

I'm delighted you say your husband wants to help you, even if he gets it wrong sometimes. Maybe you need to be more honest about your needs so his efforts are not off-target?

Croix

Thanks Croix. I will try to put your ideas into practice.. I appreciate your thoughtful replies. They help me feel like someone cares & is trying to understand.

Today I need to put things on hold. Yesterday was ridiculously busy even if productive. This morning was worse. I had to get the car brakes fixed. By the time I got home I had 30min to get breakfast before walking back to pick it up Then dropped the car home before walking to the dentist. I didn't drive as I needed anti anxiety tablet to cope so didn't think I'd be safe driving home. 2 hours in the dentist chair was very difficult. I ended up with a panic attack when the used a burner to heat up the filling material to fill the roots. They stopped to give me a break but I just wanted to be finished. Evan now I keep thinking I can smell something burning but I'm sure it is my imagination. I need to take time off to recover as I'm still very uptight. I was supposed to finish with the dentist today but it took longer than planned so they only put a temporary filling on the tooth

Actually Dear Elizabeth I though you might go crook or be impatient. Horses are miss-named, it is walruses who are the true nags.

Reading of your adventure at the dentist I think you did exceptionally well. Just the dentist alone is a trying experience, add to it burning up close . After your panic attack you persevered to the extent of a temporary filling - pretty impressive self control.

So take time to recover, that's a legitimate need.

Can you invest in some très tasteful popularly-priced pungent perfume to mask any real or imagined smells? If you select wisely you won't be able to think of anything else. It may end up a case of your dentist's eyes watering instead of his patient's.

Croix

I might try putting on some drops of lavender oil before bed. It is supposed to be relaxing & hopefully will block out other smells. Just need to keep away from my husband. He doesn't like lavender!!! Pity he didn't tell mew until we were already married as I love lavender. I'm debating whether to take some meds to help me sleep but I have to get up early to get my husband to the station so don't want to be still affected.

Tomorrow once I drop off my husband I have a day to myself except for a psych appointment. I will try to take time to relax & recover. Mind you that will be a challenge.

Hello Elizabeth,

Im just checking in to see how your feeling after your dentist visit...

Grandy.....

Im OK but feel a bit tired and unmotivated

Things continue to be very busy. We went away for 10 days which was nice but put increased pressure on me. We continue to have a lot of different appointments mainly for my husband. I need to supervise him with his physio & speech exercises which I struggle to find time for.

My daughter is moving next week so I need to help her I'm unsure how to fit everything else into my schedule without getting really stressed

Dear Elizabeth~

It's nice to hear from you, even if you are not feeling that good.

I know perfectly well you have an awful lot on your plate being a carer and it simply seems to get more encompassing and more taxing. I"m not going to say anything about you about putting extra pressure on top, you can read previous posts if you really want to be nagged:)

Given that the basic situation is not going to go away wiht oyur husbands disabilities what thoughts do you have about mental relief for you - even if only for a few minutes at a time?

Two questions to ask -did you get your fangs fixed, and has your daughter moved?

Croix

Thanks Croix, My daughter has moved. Unfortunately we will go through the process again next year when they finally get their own house built!!! I found that stressful & always left feeling bad for leaving her in such a state but unable to do any more. Her husband didn't want help other than family which meant I was the only one to help. I'm glad I helped because my daughter needed me and appreciated my help.

My last visit to the dentist was traumatic with treatment setting off PTSD symptoms. I was having a root canal treatment which has taken much longer than it should so I still have to go back for the final session. I have done nothing about the front teeth because is is cosmetic & I can't cope with more dental work. I'd rather continue as I am avoiding photos as I hate being told to smile. My smile is a grimace as I try to hide my teeth.

I promised my psych that I will try to organise regular carers for my husband & will ring about doing dance lessons before the next session. They are both things I keep procrastinating. I hope by having a regular carer my husband will get used to it & be able to do some things I struggle to find time to help him with. I hope it will be easier to arrange extra help when needed. At the moment I find it too hard to find time to arrange help that I do it all myself. If I don't use the NDIS funds I will lose them in future years so I will have no access to help when things go wrong eg I'm unwell or my husband is unwell & needs extra help as happened earlier this year.

I have always loved dancing but my husband isn't very good. It is harder now he is blind so I would like to try dancing lessons to see if we can overcome the barriers so we can enjoy it again.

With all the things going on I seem to have got stuck in a rut struggling to find enjoyment or relaxation in anything. Attempts to overcome this seem to backfire taking up time & creating more stress.

Dear Elizabeth~

May I say I found that a most encouraging post becuse you are talking in terms of getting help with you husband and lessening the pressure on you -hooray!

As for dancing lessons, it sounds a very excellent idea, perhaps waltz rather than Zumba, at least at the start:)

Croix

Dear Elixabeth~

I've every confidence you (eventually) learn from experience and that will lend you the strength to persevere.

Are you old-fashioned and will go with Mrs Astaire , or perhaps more modern and become Ms Rogers?

Croix

I'm Old fashioned I hate the term Ms It seemed such a petty thing to refused to be known as Mrs or Miss. We shouldn't be ashamed of our married state!!!

I wish I could find the magic wand to enable my husband to dance latin American dances properly. I cringe watching his body move so awkwardly. He never go it when he could see so I don't think he's going to be better now he's blind!!!! At least he's willing to try.

Yesterday I got nothing done which was frustrating as the weather was cool enough to do things. I'm already struggling with the heat & its not even summer. I'm really struggling with fatigue. I've done a bit better today although I'm slow doing things.

Dear Elizabeth~

A day doing nothing is - for you -a victory. Keep it up:)

The Merengue can be danced slowly (walking or shuffling pace) despite some bands trying to speed it up. It is the slowest of the L.A. dances I know of and also has the advantage both partners hold each other in a close supportive manner.

There you go, dancing lessons from a walrus yet!

C

Thanks Croix, Doing nothing is not a victory. It feels like a failure.

What I really need to learn is what can I do which is relaxing & leaves me feeling refreshed & rejuvenated. Doing nothing allows my mind to work overtime filling it with negative thoughts so not only do I not achieve anything useful I'm left feeling more depressed, anxious & tired. When I was younger I was much better at this interpersing periods of intense study with enjoyable physical activity to give my mind a rest. I struggle to find things that work for me at this time.

I've been down today. I had a busy weekend but was trying to complete a project but something went wrong so I had to start from scratch leaving me with more time pressures & feeling very stressed & frustrated.

This morning my son rang wanting to borrow money. It upsets me that they continue to be so financially irresponsible. I feel mean saying no but I'm concerned that helping them is just enabling them to continue the way they are which is not good. I feel guilty that we don't see them much. They rarely visit & I am uncomfortable around my DIL.