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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. Elizabeth CP
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    17 August 2017 in reply to Shelll

    I had muesli with yogurt & milk. Breakfast seems to be the easiest meal as I find the muesli healthy & satisfying while easy to make. I made bread for lunch in my breadmaker using homeground wheat. I was doing it regularly last year while on my diet as I found it more satisfying than shop bought bread. I then stopped so got out of the habit. We had some cold meat & salad with the bread for lunch.

    I need to keep working on the visualisation till it gets easier to overcome all the negative stuff in my head. The trip to England will not be relaxing. I will be very tired when I arrive & will take time to settle due to the jetlag & long flight. I am trying to think of ways to manage this to enable me to cope as well as possible. I'have planned a couple of driving tours which have the potential to be really fun if organised well but could be very stressful if not since I have to drive, navigate, pack unpack, & help my husband in unfamiliar environments etc etc. I am trying to plan the drives in as much detail as possible to make it as easy for me as possible. I need the driving instructions written in a way I can follow them very easily. This means there is a lot of planning to do now but hopefully it will be worth it. My aim is to have as much time to walk & explore interesting places. I'm leaving the time at my son's for him to organise. He has a second car so I won't need to drive while there which will give me a welcome break. I just remembered it will be blackberry season so I can pick blackberries behind my son's. Big juicy tasty ones not like our dry insipid Aussi ones!!!

  2. Shelll
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    17 August 2017 in reply to Elizabeth CP
    Ah big juicy blackberries.... yummy.
  3. Elizabeth CP
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    18 August 2017 in reply to Shelll
    Last night I tried without sleeping tablets. Unfortunately my husband is sick so I was kept awake with his coughing. I'm not sure how I'll go tonight as he is even worse. I need to sleep near him so I can help if needed so sleeping elsewhere isn't an option. It is frustrating when I try to get back on track only to have things go wrong. I find it much harder both physically & emotionally when he is sick. Minor illnesses have escalated quickly in the past to him being critically ill.
  4. Shelll
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    18 August 2017 in reply to Elizabeth CP

    Hi Elizabeth,

    It would be physically and emotionally draining for you when hubby is sick like that. You need to keep a close eye on him don't you? Have you ever considered respite, where like a carer comes in over night etc? Mmm maybe you have or it's been talked about before, I cannot remember.

    I long to help in some way, but I just do not know how to Elizabeth. So I hope by you venting out stuff helps a bit. And I do hope you get some kind of rest and that your hubby picks up again real quick.

    Shell xx

  5. Elizabeth CP
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    19 August 2017 in reply to Shelll

    Thank you Shell for your thoughts. It helps having someone listening & encouraging me. Respite overnight won't work unfortunately. Our attempt at having a carer come proved unsatisfactory. Once the NDIS starts I hope to arrange something. We have a couple of ideas to set something up on a regular basis so we can build a relationship with a carer so the carer understands my husband's needs so if something goes wrong & we need respite we have someone who knows what is required.

    My husband is a little better but still unwell.

  6. Shelll
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    25 August 2017 in reply to Elizabeth CP

    Hi Elizabeth, I was thinking of you again and wondering about a couple of things.

    How are you getting along for one. And how is your hubby , is he feeling any better? And the other thing was, well I was thinking it must be getting close to the time you are heading over to the UK. And I wanted to say , may you have a relaxing and special time over there. And that you enjoy your visit with your family.

    See you

    Shell xx

  7. Elizabeth CP
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    25 August 2017 in reply to Shelll

    Thanks Shell for your kind thoughts. I leave next week so I've been really busy. Because of my husband's condition I need to plan in detail so I can cope. I used to enjoy doing things on the spur of the moment. I would look at brochures or maps as my husband drove & decide on the spot where to go but now I have to drive & navigate & if I don't know where I'm going I get really stressed.

    My husband is much better fortunately. I am up & down. I am trying to walk most days but avoiding unhealthy food is a real struggle.Sleep is still an issue although better than a couple of days ago.

  8. Croix
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    26 August 2017 in reply to Elizabeth CP

    Dear Elizabeth~

    It looks like things are a bit better, with even a little more sleep. I'm glad for you.

    I know the planning thing. I've tried to get across capital cities by making strip maps so I don't need to do much except count intersections. Never seems to work out exactly as planned, but normally close enough.

    Walking is a great thing, getting away from an environment associated with stress and fresh views (inside and outside) quite apart from the physical benefits.. You are wise to try to keep it up.

    Getting ready for a trip like yours is a pretty monumental task. Good news your husband is much better

    Croix

  9. Elizabeth CP
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    26 August 2017 in reply to Croix
    Thanks Croix, Sleep is obviously critical for me. I've had a few nights with difficulty getting to sleep. Last night I woke up early after a broken night sleep. By this evening I feel tired & down & struggling to motivate myself to do things I need to do. Unfortunately I have a lot to do on the next few days so I can't afford to stop but I also can't afford to be stressed as that just increases the anxiety & stops me sleeping
  10. Shelll
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    1 September 2017 in reply to Elizabeth CP

    Hi Elizabeth,

    It must be extremely close to you leaving for the UK or perhaps you have left already now. I am thinking of you.

    shell xx

  11. Elizabeth CP
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    2 September 2017 in reply to Shelll
    Thanks for your thoughts Shell. I left last Tuesday 29 Aug. Unfortunately I hurt my back the day before. Initially thought it would get better if I was careful but it made the final prep difficult. It got worse. They almost stopped my flying but I managed to persuade them I'd manage. It is better than it was on the day I left but still not good. I hate being restricted & nt being able to walk where I want so I'm struggling. I find I have difficulty coping with even little things going wrong when I'm tired & in pain & I don;t think clearly so I make mistakes & get annoyed with myself (& my husband even if he's not done anything wrong) Today was better than the day before, I don't know why my back is so bad as I didn't do anything to injure it.
  12. white knight
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    3 September 2017 in reply to Elizabeth CP

    Hi Elizabeth

    I hope you are ok.

    Since retiring 4 years ago Ive tried to get a full 8 hours sleep. Not easy when one has worked shift work.

    Slowly I got there and it has contributed to less bad moods.Good sleep is crutial.

    Tony WK

  13. Elizabeth CP
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    4 September 2017 in reply to white knight

    Thanks for your thoughts Tony.

    You are correct sleep is essential but difficult to get when you are in pain. Last night was bad & today has not been good due to the pain I'm not very patient & I hate being limited in what I can do

  14. Elizabeth CP
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    8 September 2017 in reply to Elizabeth CP
    I am overseas with my son supposed to be having a wonderful holiday. After a driving holiday with my husband which degenerated into a disaster I finally made it to my son's today & then saw the GP. Now on medication for pain & to help relax my muscles & makes me dopey. I need to rest to recover. I feel really disappointed. I love to walk & explore new places but by yesterday I was so bad I could could barely walk. & then I usually needed to hold onto something. I feel bad because I've ruined my husband's holiday & I'm not good company for my son & his family. I feel really down about it
  15. Croix
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    9 September 2017 in reply to Elizabeth CP

    Dear Elizabeth~

    Company is more than showing photos and chatting. Being with your son and his family when oyu live so far away is special, irrespective of the circumstances. you know this, I'm just reminding you while those meds kick in. You are a caring person and sometimes that can lead down the path of self-blame when things don't go to plan.

    Your husband has had some time in the driving holiday, and I'm sure would have enjoyed that. Just being in another country makes a real difference.

    Let others be there for you when in need- it's not all your responsibility (yes I know your feelings will probably disagree)

    I hope you regain your mobility quickly

    Croix

  16. Elizabeth CP
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    9 September 2017 in reply to Croix

    Thanks Croix & Shell & anyone else listening. The doctor is hoping it is just the muscles which are strained & with the meds rest & gentle exercise it will improve soon. My daughter who checked me on the way to the airport thought it looked like a problem with one of the discs so I'm not sure how long it will take to recover.

    When I'm doing things like walking & exploring it takes my mind off things. Also I have difficulty believing I have any value if I'm not doing something useful or helping others so feeling so useless & dependent on others really affects my mental state. feelings of embarrassment, uselessness, being stupid clumsy I'll never be able to plan anything again without the risk of messing it up etc all these thoughts & feelings run through my head.

    At the moment I'm home alone as my son had to go out & took his kids & my husband with him. My daughter is supposed to be visiting but hasn't arrived. I become too dopey on the meds to do anything but without them I'm in too much pain. I've just taken some so I've only got a short period before I will become really dopey again.

    Sorry I'm grumbling. I feel like I have wasted my time & money coming here under these circumstanses.

  17. Croix
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    9 September 2017 in reply to Elizabeth CP

    Dear Elizabeth~

    Grumble away, it might help, can't hurt. I'm glad your family is able to get out and do things and hope it's not too long before you can join them.

    I'm quite familiar with the effect of some pain meds (I may have mentioned I've spinal problems too). That dopey-ness has an up-side. As well as relaxing your mind it is relaxing your muscles, and thus making improvement that much quicker.

    It also put you on exactly the right mental level to view UK TV :)

    Croix

  18. Elizabeth CP
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    11 September 2017 in reply to Croix
    I feel like I'm spending my time too tired & dopey to do anything. I went to Bristol this morning but was exhausted & sore doing almost nothing & had to be brought home. I can't tolerate sitting for more than 5 min. All my walking & exercise counts for nothing now. I am supposed to be hiring a car next week to do a driving holiday round Iceland but unsure if I'll make it. I just feel like crying. If my husband could help it wouldn't be so bad but I'm scared of being stuck in the car unable to function again The last 2 days in Ireland were really scary I was literally screaming in pain trying to find somewhere safe to stop & then struggling to get out.
  19. Shelll
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    12 September 2017 in reply to Elizabeth CP

    Hi Elizabeth,

    I am not quite sure what to say, but I am hearing you. And I am so sorry that things have not worked out the way that you planned or hoped for. Maybe have a good cry, perhaps it will help. Is there anyone else that could be a driver for you at all? Poor darling...

    Long to help you somehow Elizabeth.

    Shell xx

  20. Croix
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    12 September 2017 in reply to Elizabeth CP

    Dear Elizabeth~

    There are times when I just have to take my pain meds and do virtually nothing, and it sounds as if you have hit a similar patch. It is so frustrating, the mind wants to go and the body just says an unreasoning "Nup" - and that's it.

    I hope this state passes to something more manageable soon. As for driving round Iceland, I'd think twice even when good, I guess you are braver than me even to book it in the first place.

    Croix

  21. Elizabeth CP
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    12 September 2017 in reply to Croix
    I'm feeling a bit better & trying to reduce the meds so I am human but still very limited in what I can do. I'm unsure how far to push myself. If I do nothing I'll remain really weak & be unable to do anything. If i do too much I'll undo the recovery I've acheived. I need to make a decision soon as to whethere to cancel Iceland but will need a doctor to write a letter to claim on insurance. I was improving a week ago before getting much worse so I don't know how ''''i'll go with the long drives. A few days aere verey long as there is little accomodation available is certain areas. I Have always pushed myself when travelling sometimes that works but sometimes it leads to a disaster. If my husband was able to drive it would be fine but he can't so everything is left to me. If I give up I'll regret it. as I'll be too scared to try anything again. If I go & it is bad I;ll end up feeling worse. I don't know what to do.
  22. Croix
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    13 September 2017 in reply to Elizabeth CP

    Dear Elizabeth~

    I'm glad you are a little better even if it does place you in a quandary.

    I guess one has to be flexible, I'd not be sure of the value of bulling though if the stakes are so high and there is a good chance of being stranded and incapacitated - even if English is reasonably well understood there.

    While I can understand disappointment and even feeling you are letting others and yourself down if you did not go is it actually an all-or-nothing situation, are there less taxing alternatives?

    Croix

  23. Elizabeth CP
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    14 September 2017 in reply to Croix

    Thanks for the kind thoughts croix,& shell. I'm currently on the bed feeling really down

    Saw a GP yesterday after attempting to walk into town. Needed too many stops & felt exhausted. Walking is my normal outlet when I need to escape or have break or feel better

    The GP thought driving around Iceland is likely to be too much. I can takeeds at night for the pain but not during the day particularly when driving

    I feel like I've wastef all our money coming here for nothing. I can't I even enjoyy grandkids do I give in and try to claim on travel insurance but that only pays good what I haven't used or do ii push through. And. Hope ii can cope either way I'll be left regretting for. The rest of my life

  24. Shelll
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    14 September 2017 in reply to Elizabeth CP

    Ah Elizabeth you do sound really down, your emotions are jumping of the screen. Poor thing..... I wish I could advise you on what you should do . But the only thing coming to my mind is "what does your hubby think about all of this? " And your son? After all it is your hubby's holiday as well. Sometimes we are just unable to work things out ourselves and need to let go. I mean no offence, truly I care about you Elizabeth. It's sounds like you are carrying all this burden on our own. What does your hubby think?

    Wish I could give you a gentle hug or something.

    Shell xx

  25. Croix
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    14 September 2017 in reply to Shelll

    Dear Elizabeth~

    Yes, it's not an enviable position, though your doc sounds sensible about meds and driving.

    I think Shell asked a good question - what does your partner and son say about things, what you should do? As for it being a waste, you are over there and seeing your son and family, even if not ideal it is a pretty big thing. Your husband is being taken around too.

    I hope you can take things in stages, it sounds as if oyu tried to much too soon attempting that walk into town. Do you use a stick? I find one essential.

    I hope you can have a rest

    Croix

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  26. Elizabeth CP
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    15 September 2017 in reply to Croix

    Thanks Croix & shell I relly appreciate your encouragement. I feel a bit guilty because I aren't really doing much to help others on the forums Being over here I have limited time & emotional energy. I don't use a stick. I used to walk up to 30km in a day in the past. After some injuries I worked hard to build myself up so I could walk up & down most hills for hours. I'm limited by what my husband can do as he relies on a blind cane so on very uneven ground it can be very tiring as I need to watch out for him. I normally carry most of the load & do most things so he doesn't get overtired. Fatigue can lead to serious problems for him. so I hate having to rely on him as I can't carry any weight without my back hurting.

    It is improving & I bought extra OTC painkillers to use during the day so I can stick to the strong ones at night. We are going to attempt Iceland I will cut out a couple of things to shorten the drive but there will be some long days. If I don't go I think I'll just be too depressed & regret it for ever. I still regret missing a section of a trek in the Himilayas I did in the 70's. I tried to pretend to be OK but then got to a point were I couldn't breath so it was impossible to keep going. I still feel bad about missing that section of the trip. My husband is leaving the decision to me.

  27. Croix
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    16 September 2017 in reply to Elizabeth CP

    Dear Elizabeth~

    Doing the trip but cutting some parts out sounds a sensible compromise. Do you think you will suffer any adverse effects to your digestive system with the extra pain-killers? I tend to find that.

    I can see how looking after your husband to that extent is so taxing, one hears of all sorts of gee-wiz gadgets to assist with sight but I suspect they are only any good for controlled conditions. Does your husband's condition mean he cannot appreciate visual records of your journeys?

    I've always thought you a determined person and your recounting how you recovered in the past is quite impressive (I'm a little envious really:)

    I would not give your level of contributions here another thought. I'm sure you will return in full force.

    Croix

  28. Elizabeth CP
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    16 September 2017 in reply to Croix

    Thanks croix my husband's condition is very rare. Don't know if anyone in Aus has it. He uses a white came for guidance including a special one for bushwalking. At home I try to have everything where he expects them . Unfortunately his other muscles are affected particularly the digestive system but hands and legs are also affected hence he wants to travel before it is too late. It is a balancing act of doing enough to maintain strength without overdoing it

    I am learning how much painkillers I need to cope without really bad side effects.

  29. Shelll
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    20 September 2017 in reply to Elizabeth CP

    Hi Elizabeth , I am not sure if you have left for Iceland or not? But wanted to let you know that I am thinking of you and if you are there that you are enjoying it the best that you are able to. You and your hubby together.

    Shell xx

  30. Elizabeth CP
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    21 September 2017 in reply to Shelll
    Thanks. This is a brief reply. I'm in Iceland so little time for the internet & often unreliable. Today was good weather & lots of interesting places. I've devices some strange exercises which look stupid but seem to help my back. Problem is I need a pole or fence or something the right height & solid so have to wait till I find something suitable usually in public view. At least the people won't see me again. will probably wonder about that strange person leaning on poles in funny positions. Still struggling with the meds. Can't take more due to needing to drive but still waking in pain. Also now have stomache ache from them. Tomorrow is back to rain but a relatively short drive so I'll try to take it easy. I get very frustrated & stressed with the pain & simple things like tying up boots are impossible. If I drop anything I have to stand on it to stop it blowing away till my husband can get it for me. I'm trying to focus on the good. I would have regretted not coming.Hope you are well

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