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Forums / Long term support over the journey / Feeling down due to fatigue & undiagnosed health issues

Topic: Feeling down due to fatigue & undiagnosed health issues

  1. Croix
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    24 September 2017 in reply to Elizabeth CP

    Dear Elizabeth~

    Well, it sounds as if you are having difficulties but coping. You are brave and determined, frankly I would have chickened out of Iceland.

    If you have found any sort of exercise that helps that's great! Let them stare and oggle.

    I find with boots my best recourse is tall leather boots, not too hard to slip on or off. No laces or Velcro, and I can grip them around their tops and just wiggle my feet in. Helps a lot at airports during security if they ask you to take your shoes off. All I need is a chair.

    How is your husband holding up? Do you have much longer there?

    Croix

  2. Missing user
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    24 September 2017 in reply to Elizabeth CP

    Dear Elizabeth,

    I have only just found your current thread, since the others you used to use a year ago are not longer used.

    I will keep this brief for now as I have not fully read right through this thread. But I think you're incredibly brave doing this trip you've undertaken. Far more than I'd ever be. And I know dreadfully painful and debilitating back injuries are. As well as the difficulties they present in doing anything at all. Agree about the NSAIDs as well, I cant stay on them for long, as they upset my stomach really badly. So when I do need to go on strong pain killers and/or OTC relief, it is for the shortest period I can endure.

    I wouldnt worry too much about looking weird doing those special exercises of yours. People do weird exercises all around the world. And as you say, you will be back on the road the following day anyway.

    It sounds as though you are getting some small positives from your trip, despite all the difficulties experienced. And as for you feeling as though you have ruined your husbands trip? Nonsence - knowing you, you have made it a wonderful experience for him. Definitely to your own detriment! Once you're home again, I look forward to hearing more about all the good aspects of your holiday. And yeah, although the trip didnt work out as well as you'd have hoped due to circumstances beyond your control, you would have regretted not going. I admire your commitment and determination no end. (-:

    Sherie xx

  3. Elizabeth CP
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    28 September 2017 in reply to Missing user

    Thanks Croix & sherie for your replies. I arrived home today. Picked up by daughter then left to babysit for an hour. The kids were fine so that was OK. Then she suggested loading up cars & trailer to move a load of stuff over to her new house (The landlord is selling their current house & they couldn't find anything to buy in the time frame to suit their budget) so we could see her new house. She also gave me a treatment for my back & instructions about not lifting anything & further suggestions for exercises. I tried to be good & leave the heavy lifting to my daughter & my husband but I find that very difficult.

    Currently exhausted with tons of paperwork to do including travel insurance claim for damage to hire car in Iceland. Nothing major. Just damage from hitting a bad pothole on a very bad road!!!!

    Croix Your idea with the boots would work except I have terrible feet with difficulties finding shoes to fit. I needed to wear hiking boots with laces & orthotics to give myself the best chance of coping with walking with my bad back. In Ireland I tried wearing sandles some days as they are comfortable & easier to put on. (They are ones suited to walking rather than flimsy ones for show but I noticed my back was worse plus Iceland you really need good waterproof supportive boots. I get really jealous seeing people in nice shoes when I'm stuck with hiking boots or really boring practical ugly 'dress' shoes.

    It will take me a while to get the courage to travel again after this trip. I have always preferred adventurous trips & really struggle with the idea of being restricted. Most people who know me think I'm stupid or crazy rather than courageous & they are probably right. I remember turning up at school soaked to the skin after falling into the creek while taking a short cut. Later as a young adult I ended up with various injuries, frost bite concussion from not being as sensible or careful as I should be. Now I feel like life is passing me by. I need too go as I am too tired

  4. Guest_1055
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    28 September 2017 in reply to Elizabeth CP

    Hi Elizabeth, well you did it, you went to Iceland!!

    I am feeling tired too now, but wanted to say Elizabeth your life to me seems that one big adventure. I have quite a bit about it stored in my brain here, from going walking in the cold and feeling invigorated on a ship, using some kind of toilet that gives a good view of ranges or mountains. Walking up lots and lots of steps. Helping your hubby get around because he is blind. Playing with your grandchildren and watching them pretend to fix things with toy tools. Working as a teacher then an OT. Now visiting Iceland with a sore back. Doing strange looking exercises whilst trying hard not to care what people think.

    And I know there is more, anyway it is incredible. You seem to live your life to the fullest the best you can. And I love that about you.

    okay bedtime for me. You are incredible dear Elizabeth, and I am thankful that you have shared some of yourself and glimpses into your world. I have seen these glimpses for about 1 1/2 years. Wow that long???

    in admiration of you

    shell xx

  5. Elizabeth CP
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    29 September 2017 in reply to Guest_1055

    Sorry Shell, I don't feel very adventurous at the moment. Tiredness & jetlag are making everything feel worse. I know I've just returned from holiday & should be grateful for what I've been able to do & see. Instead I feel guilty sore & down. I arrived home to a ton of mail all of which needed sorting weeks ago. Sitting down hurts so it is hard to sort & taking longer than it should. My husband would ask what I was doing (He can't see ) & I would feel like a failure or guilty for not being more efficient. Little things seem to be really overwhelming me.I used to be organised & able to manage but I feel I've lost that.

    I feel as if all the work I've done exercising over the last year has been wasted & I'm back at the start . My daughter has given me more exercises some of which I find difficult as I'm scared of doing them wrong & making things worse. I'm not supposed to lift & need to be really careful bending down. This means my plans to fix the house & garden are once again on hold. It will be too late to do the garden by the time I recover & my oven doesn't work but there is no point in buying a new one until I fix where I want it. I know normal people would pay someone to do this but that would leave me feeling totally useless. I know that seems silly but I really struggle if I can't do things for myself. I feel guilty not doing things & i feel really bad not being able to help my daughter move this weekend. I sound like a real winger. Why can't I just be grateful for what I have.

  6. Guest_1055
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    29 September 2017 in reply to Elizabeth CP

    Hi Elizabeth, I am not sure why you cannot be grateful. Writing a list has helped me in the past with this. I might even start off with the basic things like ... Thankyou for clean running water, Thankyou for my pillow etc. Then I keep going until I cannot think of anything else. I may end up with pages and pages. Something changes within. I am not sure but you start to feel more positive or something.

    I think this feeling of useless and feeling guilty when you are unable to do things is connected to that time when you were a little girl and you were in shock and unable to retrieve or help get items from your home when there was a fire. It just sort of fits somehow. What do you think? Maybe you need to forgive that little girl. It is only my thoughts Elizabeth. And yeah it doesn't seem silly.

    Did you hubby enjoy the holiday ? Anyway I hope the jet lag eases soon.

    Shell x

  7. Elizabeth CP
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    29 September 2017 in reply to Guest_1055

    Thanks Shell, You are right. I should be grateful for all the things I have & have done. Unfortunately I just don't have the emotional or physical energy to do it. Knowing I should just makes me feel even more guilty & such a terrible worthless person.

    The issues re feeling guilty & useless are related to my childhood I think. Not just the fire but also the bullying. My parents always worked hard to deal with whatever happened so I learnt this was an important trait. I wanted to help them but never seemed to have the skills I needed. It didn't matter that they never complained or criticized I wanted to help & felt inadequate.

    Sorry I'm being so negative

  8. Guest_1055
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    29 September 2017 in reply to Elizabeth CP

    It's okay Elizabeth you will get there.

    Shell xx

  9. Croix
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    29 September 2017 in reply to Elizabeth CP

    Dear Elizabeth~

    I'm with Shell, I admire you. You do fill your life, and have mountains you deal with and overcome. A blind husband to help though life (did he enjoy the trip?), a back problem which makes any endeavor hard and some downright impossible, an adventurous spirit that seems to want to cram experiences into every minute and ... , well you get the idea.

    With doing all that you have a constant mental list of what you perceive as 'shortcomings' . Tell me do you apply the same unforgiving standards to everyone else?

    I think if my partner accomplished as much as you and I started criticizing, saying the same things to her as you think about yourself then I would be out on my ear:)

    With your oven, is it an all-or-nothing situation? Putting it somewhere then fixing it, or can you get a quote on the fix and go ahead anyway if not too much? At least you would have an oven that way and maybe feel less pressure to fix where you want it in a hurry.

    I know what you mean about the danger of exercises and have pushed too hard sometimes and had problems, so I get frightened and often probably don't do as much as I might.

    Do you have a recliner to sit in? I've an old one, many times repaired, that just suits, I'm lucky. Tried to replace it with a new one, that did not work, wife and cat have it now:)

    I'm glad you are home safe, even if sore.

    Croix

  10. Elizabeth CP
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    30 September 2017 in reply to Croix

    I am less judgemental of others because I assume they're doing their best & I can't know what they are going through. Whereas I know how much I SHOULD be doing and aren't. Unfortunately I can't divorce that rotten internal critic!!!

    When the oven started playing up I was pleased as it gave me a good excuse to rip it out & the brick surround which I hate. I asked my sons if they would help demolish the walls They enjoy an excuse to use a sledge hammer!!! Once everything was gone I planned to buy a flatpack unit to fit the space & a new oven & once installed repaint the kitchen & if possible replace ugly tiles etc. Now I can't do my part.

    Today my daughter was moving house with her husband & 3 young kids. My husband wanted to help so I drove him there 1 1/2 hrs each way which is not good for my back. I knew I would struggle as I can't stand watching others work & not help I just feel so guilty & useless. Tiredness & pain is also making me much less tolerant & overreactive. I got annoyed with my husband giving advice & instructions which led to me getting really annoyed & reacting in a way which I knew was likely to injure me further. I carried out heavy boxes to fill my car refusing to let anyone help. I ended up in tears . I told my daughter I didn't care if I injured myself as it didn't matter. I felt bad making her worry. In the end I drove my car with my daughter to unload it & then drove home leaving my husband behind to help lift the heavy stuff. Someone can drop him at the station to come home. If I stayed longer I would end up really injuring myself. I am still feeling really upset about the whole thing.

    I have always been stubborn & inpatient. I hate being restricted by sickness or injury. Maybe I'm still trying to prove to myself that I am OK & not the complete loser that the bullies implied I was. I also always admired my dad & wanted to be as good as him. I know I can't do things to his high standard which means I feel like a failure. Sorry I just feel tired & negative . I just can't seem to help myself

  11. Guest_1055
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    30 September 2017 in reply to Elizabeth CP

    Hi dear Elizabeth, you are really struggling there I can tell. And I am so sorry.

    You almost sound like you need a punching bag and have a good swing at it to let all the frustrations out. Have you been able to get much sleep?? As you most likely know the lack of it can simply affect everything.

    And you may be right in the fact that you are trying to prove that you are not a loser. And you are not, by the way.

    And I forgot to say before regarding that thankful list that I do.... well I do not feel thankful at all before I start it. Hence one of the reasons I do it in the first place. My thoughts go like this " I am just so sick of all this washing up... blah blah blah, can't we get a dishwasher" all thought and sometimes said in a complaining tone of voice. Or "we never go on holidays" etc. Anyway I wanted you to know that so you know you are not the only one Elizabeth.

    Anyway your voice was heard by me and I do care about you.

    Hope you can get a good nights sleep. And a new oven sounds awsome actually.

    In kindness to you

    shell xx

  12. Elizabeth CP
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    30 September 2017 in reply to Guest_1055
    Thanks Shell, I'm going to sit/ half lie on the settee & watch TV & try to forget all the things needing doing until my husband returns. I need time alone without expectations to get myself together.I don't have the energy for the punching bag ATM
  13. Elizabeth CP
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    4 October 2017 in reply to Elizabeth CP

    I'm feeling a little better but still quite vulnerable. I struggle with being restricted with what I can do safely. Last time I had back problems like this I never got as bad as I did this time & it took several years to recover enough I could sit without pain & carry out normal activities without risking further injury. This thought is making me feel very down & worried about the future. One of the issues is I find I'm needing so much physical & emotional energy to keep going which then leave me vulnerable & even small frustrations cause me to explode.

  14. Croix
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    4 October 2017 in reply to Elizabeth CP

    Dear Elizabeth~

    Yes back problems can be most frightening, I have that fear at times too. Unfortunately things are not always predictable, sometimes I think my spine has a mind of its own. When it gets worse than before I too worry in case it does not recover back to where things were.

    Fortunately it always has, even when totally crippling, and then I've gone on. The only thing I think is happening now is I'm probably more apt to coddle it than is sensible. I had a thing on pain management and this seemed to be a common failing.

    Now you have just finished a most taxing holiday and when you were on it had warning signs and tried to press on, even if you did reduce slightly your itinerary. So from one point of view it's behaving as one might normally expect, when stressed greatly it has reacted, but again as in the past it is normal for it to improve when the pressure is off.

    In the meantime with pain, restrictions and frustration it's hard to endure. You will master the current circumstances of course, and if it makes you crabby so be it. A chance for others to look after you dealing with your ire. I can be downright unreasonable.

    Croix

  15. Elizabeth CP
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    6 October 2017 in reply to Croix
    Thanks Croix
  16. Elizabeth CP
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    8 October 2017 in reply to Elizabeth CP

    In some ways I feel a bit better. My back is a lot better but I still an't cope with sitting normally on a chair. I can lounge back if my back is supported. Still not supposed to lift & have to be very careful bending or twisting so even basic housework I need to be very cautious.

    My mood is up & down. I'm OK if I don't have any pressure but feel very lost & without purpose. I don't feel motivated. I can't do what I would normally do without really being careful & can't be bothered with simple tasks. As soon as something goes slightly wrong I give up. I have things which need sorting out but I can't face it. I feel guilty about being so lazy. It is like I've given up & decided I'm totally useless so there is no point trying. I don't know how to get myself back to feeling more motivated to do things I'm capable of.

  17. Guest_1055
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    8 October 2017 in reply to Elizabeth CP

    I am sorry Elizabeth and I am hearing you.

    The only thing coming to my mind is itty bitty baby steps. I noticed that you have posted a few posts around the forums. That is not at all useless. So good on you there!

    Sometimes that is all one can do and that is set the bar lower for yourself. Like make allowances or something for yourself.

    I renember finding no motivation at all to get out of bed even, so even getting up and doing my hair was a step in the right direction. Just a tiny step conquered in a day.

    I care about you, but I don't know how to help much Elizabeth.

    Shelk xx

  18. Croix
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    8 October 2017 in reply to Elizabeth CP

    Dear Elizabeth~

    Getting back to feeling motivated is simple and at the same time hard. You need time.

    Shell has given a very sensible post about short steps, she really is spot-on. Same about your offering help elsewhere. If you were looking at someone else in your situation you would not condemn them, it's only the fact it is you that lets you be so harsh.

    I have the world's oldest recliner chair, often repaired and never discarded. It is the only really comfortable place that never fails. Maybe you need to find just the right platform as a retreat.

    I would imagine sorting things might wait a while, hang in there Elizabeth

    Croix

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  19. Elizabeth CP
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    8 October 2017 in reply to Guest_1055

    Shell I wish I knew you in real life & we could both encourage & support each other & do things together. You are such a lovely person Shell. I really appreciate your words of encouragement & support.

    Croix I also appreciate your encouragement & support & kind words.I don't have an old recliner!!!! I do have a couch which I sit on sideways with pillows to support my back It is not ideal as it doesn't support my head . I've never been one to sit around much. I miss my living room in my old house with large windows looking over the trees in the valley. I particularly miss the winter sun. This house seems to miss the winter sun through the windows. I wanted to repaint this room hoping to make it feel lighter & brighter. I seen to be sensitive to some colours. One house I used to get depressed in my bedroom until I changed the colour scheme but I can't attempt to move furniture & repaint now with my back. . Sorry I am rambling

  20. Guest_1055
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    10 October 2017 in reply to Elizabeth CP

    I would like to know you apart from these forums as well Elizabeth. We could have adventures together. I have thought about that before actually.

    Anyway how are you getting along now? And yeah I think I understand about the sensitive colour thing that you are experiencing. Like red feels hectic and not calming to me, the same with orange. White and ivory are more calming and give the sense of space, cleanness. Mmm blue calming again. Is that similar to you to you think?

    And your view from your old house windows sounds beautiful. I would love that as well. Hey maybe you could research different colour paints or something. Or arrange the furniture in a plan on paper or computer too. Less to think about once you are physically able to do more. Just a thought.

    Until next time, take care

    Shell xx

  21. Elizabeth CP
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    11 October 2017 in reply to Guest_1055

    Thanks Shell, Yes I like blue bedrooms as they are calming I prefer cream walls rather than white as I find white a bit clinical & harsh although nice as a contrast & in bathrooms. Brown feels depressing to me & my lounge has chocolate brown brick wall which makes the room feel very dark. I have thought of different ideas including painting the bricks but will have to wait. I had drawn plans for some projects in the garden & living room prior to the holiday.

    Yesterday I saw my psychologist & today my psychiatrist. Both encouraged me to go back on sleeping tablets as my sleep has not been good. I stopped taking pain medication & the medication prescribed to relax the muscles. I found I was getting less benefit from them over time as my body got used to them so I felt I needed to stop all meds for a while. Fatigue continues to be a problem although I no longer have pain overnight but I'm waking up often. My thinking has been very negative feeling useless, guilty, unmotivated & no hope for the future. It is easy for others to tell me to stop this but it is not easy to do yourself. I do much better when I have a goal & struggle when I'm restricted.

  22. Croix
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    11 October 2017 in reply to Elizabeth CP

    Dear Elizabeth~

    Yup, it's real easy to tell others, I specialize in that😐

    I too would find dark brick unattractive and not in the least mood lifting. I'm glad you don't have too much pain at night and am not realy surprised you are down, there had to be a reaction to your 'adventures'.

    So what sort of an activity can you do at the moment to provide you with a goal? Anything from writing a novella to nailing down your genealogy to ... dealers choice.

    Croix (who went with the flow and actually tried an emoticon!)

  23. Elizabeth CP
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    11 October 2017 in reply to Croix
    Thanks Croix, I won't add any emoticons as I have no idea how to. What I REALLY HATE is when my psych asks What would you advice someone to do if they were in your shoes!!!! He knows that I have worked with people with mental & physical illnesses & have given them lots of advice. But it is easy as an objective professional. Not so easy talking to yourself. The last time I tried to write a book was when I was 10 1/2 just before being caught in a bushfire. My childhood dream of being an author went up in smoke along with some other dreams never to be resurrected. Geneology means sitting down going through information. I can't manage the sitting or the mental concentration ATM. I am trying to sort through the photos I took but get tired because I can't sit normally & have to keep getting up to give my back a break. Hopefully if I take the sleeping tablets I will get some sleep & feel a bit better so I can cope.
  24. Croix
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    12 October 2017 in reply to Elizabeth CP

    Dear Elizabeth~

    Yes having one's own words served back on metaphorical toast can be hard to swallow:)

    I find the stable-table (a sort of mini-beanbag glued under a tray), and a tabletop wiht a stalk on one side going down to a set of wheels both excellent inventions. Allow me any posture and still remain within reach. Light enough to put to one side whenever.

    I've often thought about having a rope from the ceiling with a handle on it, but have manage to lever up with a stick so far

    Dear me, I'm turning this into a disability aids account, better stop.

    Do you have many photos to sort? I'd suppose they are on a computer.

    Croix

  25. Elizabeth CP
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    12 October 2017 in reply to Croix

    I have tons of photos. I just looked at one group taken on the really bad day. Bit depressing as the rain & grey skies & water on the lens made for bad photos & not great memories. On the other hand the one good day I took so many photos I feel overwhelmed trying to deal with them. Yes I know First World problem!!!! I'm aiming for one days photos at a time Trying to do more will not work in my current state. Normally I'm very mobile & fight against being restricted. My mum started having falls when I was a teenager & avoided going out alone for fear of falling. She was in a wheelchair in her mid 50s. I probably push myself to avoid that happening to me. I need to get some sleep.

    so I'd better close

  26. Croix
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    13 October 2017 in reply to Elizabeth CP

    Dear Elizabeth~

    Looking at images of rainy days is good when the weather is very hot, reminds one of being cool. A day's photos at a time seems pretty reasonable if you were a keen photographer and took lot of shots.

    It must have been very hard on your mum, being so restricted. It sounds as if you have a different set of problems to her.

    Happy sorting

    Croix

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  27. Lost Girl
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    18 October 2017 in reply to Croix

    Dear Elizabeth,

    You are truly amazing. I can tell you don't feel that right now but I want to assure you that it is true.

    It took me a while to read back and catch up with you. Thank you so much for taking out some time to check in with me when things have been so overwhelming for you.

    There is a lot of change in there with the move. Huge physical challenges with the overseas trip not to mention your pain and sleep issues. I have tears still from reading this. Some of the things you wrote could have been me a few months ago. I understand with much compassion how hard it is to be unable to do all the things you want to be able to do. The guilt in feeling that you are letting others down, but moreso like you are letting yourself down. I can tell from your words that logically you know that you are not letting anyone down but I know too clear that feeling. The same feeling when I would have to tell my kids that I can't even walk them to a local park for example.

    Things that have helped me with those voices that tell me I am not enough are:

    • I remind myself that if I push through I can make it worse and recovery will take longer
    • The achievement I will feel in accomplishing 1 thing now at the expense of my health will not make up for the guilt I feel not doing the next 10 things.
    • Even though I feel like I am letting everyone down, I need to believe them when they say it is ok. They don't want me to get worse either
    • I can add value to their lives in other ways even if it isn't what my ideal looks like

    Things that help with sleep;

    • If taking sleep meds, take at a consistent time each night
    • Turn off as many lights as possible so it is dark
    • Stop using screens after taking meds
    • Reading - helps tire my eyes and helps get my mind to focus on something not stressful. Helps my mind to rest from my own thoughts
    • Practice breathing. Slow normal breathing in through the nose and out the mouth.

    Ideas to destress

    • Practice saying no. Try not to take on too much as it can be overwhelming. You can only do so much.
    • People will still be there for you to help them when you are feeling better.
    • Instead of fixating on what you can't do, make plans for what you will do when you are doing better. For example ideas on the wall. Pinterest is great for finding and keeping ideas for decorating etc.
    • Remember to pace your activity. If the body says no after an hour, an hour it is.

    You probably know all this. I know how frustrating it is. My heart goes out to you xx

  28. Elizabeth CP
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    19 October 2017 in reply to Lost Girl
    Thank you Carol for your thoughts & comments. All of them are correct and while I know them I need reminding at times. There are others who may experience similar things & your advice is so clearly written it is easy for others to read & understand. Hope you continue to improve. I am better than I was but still can't sit long without pain which restricts the more restful activities. Like you I find reading before going to sleep helpful.
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  29. Elizabeth CP
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    22 October 2017 in reply to Elizabeth CP
    I was improving & was able to tolerate sitting in a normal chair rather than propped in a reclined position but crashed today. Had a sleepless night tossing & turning with my mind on the go constantly. I ran out of sleeping tablets so need to find my script to buy some more. Today I didn't have time or energy to exercise before church & then couldn't cope with sitting & couldn't concentrate due to fatigue. I went because my husband can't drive himself. Now feel flat, tired & useless.
  30. Croix
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    Croix avatar
    11086 posts
    22 October 2017 in reply to Elizabeth CP

    Dear Elizabeth~

    It's very frustrating when we get a taste of improvement, such as being able to sit, then having it snatched away.

    I guess if one looks for a ray of light then the result of running out of tablets might account for part of it. Something that is controllable reasonably easily. Hopefully with a fresh supply and sleep sorted things will get back on track.

    Flat and tired I can well understand - but useless? Come on, chauffeuring and accompanying your husband is surely enough for one day.

    Croix

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