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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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    30 January 2018 in reply to Elizabeth CP

    Dear Elizabeth (with a wave to Pamela, Karen and Quirky)~

    Thanks for asking, the time away has helped, my wife says my sense of humor is returning which is a good sign (though now she has to put up with my silly jokes:)

    As for feeling you have not had anything 'terrible' to contend with. Um...

    There is a tendency for many of us to discount our own suffering as part of normal life but at the same time regard the trials of others quite differently. PTSD, a disabled partner, spinal problems and all the rest are pretty major don't you think? You do belong here you know.

    You help in other threads too.

    As for the air conditioner, I've a feeling your current setup is a false economy. True one can keep on going as is and spend one's life reacting to the elements, however quality of life is worth a lot, even in monetary terms.

    I do confess I regarded an a/c in the bedroom a luxury for umpteen years, particularly as my partner would gain no benefit most of the time. Having had one for a year or so I can say it has been a life changer.

    Pamela: Ta for the greeting and good thoughts, I hope you are coping ok too.

    Croix

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  2. Elizabeth CP
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    31 January 2018 in reply to Croix

    Thanks Croix & Karen,

    I'm glad you are feeling better & I look forward to your warped sense of humour. Our family have a very warped sense of humour. It is much cooler today & yesterday. Even had to put a jumper on tonight!! Tomorrow I hope to finish a big project I've been doing. It turned out larger & harder than expected & the hot weather made it worse so I really need a break. I need to find a way to relax without having my brain going full time reminding me of all i should be doing. There is a lot of chores which have been put off while I've been busy but I need to avoid worrying about them till I've recovered.

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  3. Elizabeth CP
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    10 February 2018 in reply to Elizabeth CP

    I have been away. Unfortunately the trip wasn't relaxing & came on top of a very busy stressful period. I'm unsure if I can explain properly what has been happening & how I've been feeling.

    Positives are that I finished a project (fitting a floating floor in my kitchen after painting it & an unsatisfactory attempt to sand & polish the floorboards.

    The trip was to fulfil our dream of hiking in the alpine area. We both used to enjoy this but it is now much harder now my husband is blind. We succeeded in completing the 22 km hike on a lovely day & both enjoyed the scenery or in my husbands case the sense of the surroundings.

    The negatives. I was already tired which made preparing stressful. I ended up taking some shortcuts with prep & we left later than planned. This was not ideal but the only way I could cope.

    I found it really hard to relax. One walk we did proved too challenging so I was on edge having to slow my pace to suit my husband & worrying about how far to push while not wanting to have my husband collapse on me. The scenery reminded me of what I was missing. I really miss being able to walk & explore as equals rather than missing part of the walk & having to turn around constantly to check on my husband & assist when required. I feel as though there is a huge responsibility to provide my husband opportunities to walk as he wants but knowing if anything goes wrong it will be my fault for going too far or not planning adaquately. The constant monitoring & having to decide when to push on & when to rest , drink or eat. Because of his digestive/ swallowing issues food & drink have to be carefully managed.

    After hiking during the day I would be tired physically & mentally in the evenings but needed to set up camp, prepare food etc. Even though I chose simple meals & tried to set things up as simply as possible I found I was very uptight & couldn't relax. I tried to read before sleeping but this wasn't enough to calm me down.

    We walked through some areas previously burnt in bushfires. I coped the first day but noticed anxiety levels increasing each time we saw further burnt areas even though the fires were years ago & there was no immediate fire threat.

    I am home now & still trying to find time to relax & struggling to know how.

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  4. Ggrand
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    11 February 2018 in reply to Elizabeth CP

    Hello Elizabeth,

    Im sorry that your trip wasn't very relaxing, I hope now your home you can do a bit of mindfulness and start relaxing,

    Your first walk sounds amazing, wow 22 kilometres, sounds like you had a nice time looking at the scenery as you walked..I think imo 22 kilometre walk would make anyone tired and possibly stressful.

    The other walks sounds like you had your husbands welfare well on your mind which would have been so worrying for you, plus it was a was harder walk, and I would imagine that in itself would have caused you a lot of stress and anxiety, let alone exhaustion from mental and physical activities.

    I read somewhere, that when revisit a passion of long years passed, it just hasn't got the same excitement, joy or feeling about it, like the first time around..I'm not sure on tThat, just something I read somewhere,

    After hiking, then having to prepare meals, get the beds, tents, etc ready, hat would make you so busy that you found it hard to reflect on the beauty you saw on your walks.

    It must have frightened you a little walking through the burnt out areas of the bush. I hope I don't trigger you, I just love the look of the burnt area with the lush greenery of new growth.

    Now your home take time to rest and slowly get back into your routine, slowly, there is no hurry, Maybe, get out some puzzles, games, mindfulness music, meditation, reflect on the good parts of your trip, to start to relax..

    Welcome back Elizabeth,

    Kindness only,

    Karen.xoxo

  5. Croix
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    12 February 2018 in reply to Elizabeth CP

    Dear Elizabeth~

    Well I read your account - welcome back. It does give a very clear picture of your trip, the only thing that leaves me puzzled is why on earth you would even mention relaxing and the trip in the same sentence. It was an exercise in logistics, exertion and responsibility. True you are eminently capable of organization and seeing things through. It does however come at a real cost, the majority of which you personally seem to be paying.

    As you rightly observed it is no longer a case of walk & explore as equals. Another thing that worries me is that normally you are self-motivated (far too much but there it is). This time you seem to have the additional burden of being called to account if things go wrong. You did say it will be my fault for going too far or not planning adaquately - would this be your husband's view or have I misinterpreted?

    Hopefully now you are home you will resit the impulse to concrete the driveway, re-roof the house or whatever necessary task you had in mind and just try to veg. Maybe have a stab at reading again? You know all this, I'm just reminding you:)

    Croix

  6. Elizabeth CP
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    12 February 2018 in reply to Croix

    Croix how did you know about the driveway. I thought you weren't supposed to know anything I haven't said on the forums!!!! I don't need to reroof the house but my pergola needs reroofing after the laserlight was damaged in a recent hailstorm & my shed needs reroofing. My son suggested he help me with the pergola, On Friday after arriving home a contractor knocked on the door to discuss my driveway. He is replacing the damaged pavement in front of my drive but pointed out that my drive needs doing at the same time as it is badly cracked. On Sunday my son suggested I cancel the guy doing it & do it myself to save money. He would help a bit. This created some conflict in my mind. I felt overwhelmed at the thought of doing the drive but not doing it seemed lazy. You'll be glad to know I am NOT doing the drive.

    I'm trying to relax this week including reading but finding it hard to do. There is still so many things needing doing.

    it will be my fault for going too far or not planning adequately. This is my opinion. This is reinforced by my children saying things like 'Don't overdo it Don't hurt Dad!! When my husband is struggling he will complain I'm going too fast or he's too tired needs a break or I;m helping enough but sometimes we'll get to the top & he's really happy so it is hard to know how much to push

    I need to find a way to relax while on that type of trip so I can enjoy it more & cope better

    Karen Thank you for your words

  7. Croix
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    12 February 2018 in reply to Elizabeth CP

    Dear Elizabeth~

    It was obvious to any thoughtful person you would think the driveway needed doing:)

    On your other point:

    I need to find a way to relax while on that type of trip so I can enjoy it more & cope better

    Well, perhaps having a 3rd person there helping?

    Croix

  8. Elizabeth CP
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    14 February 2018 in reply to Croix
    I saw my psych today. My anxiety levels have been escalating. Tiredness combined with constant stress as I try to keep up with everything I feel I need to do are contributing factors but then this anxiety then stops me from getting the rest or relaxation I need to keep going effectively. This week I have chosen not to do any projects but have found it difficult to relax. I feel as though I'm failing. My psych has challenged me to not start any projects for at least 2 weeks to give me time to recover. It sounds silly but the idea is really confronting. What do I do for 2 weeks that will help me feel better if I can't do anything constructive !!!!
  9. Croix
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    14 February 2018 in reply to Elizabeth CP

    Dear Elizabeth~

    What do I do for 2 weeks that will help me feel better if I can't do anything constructive !!!!

    I think one thing that is easy to forget is the effect of practice. It may be difficult to endure enforced inactivity for long (read 2 weeks) periods of time, however if necessary break it up into smaller chunks each getting progressively longer. The mind may well adapt

    Mind you I'd council against it becoming too effective, otherwise you may enjoy it too much and never get all those highly necessary tasks done

    Croix

  10. Elizabeth CP
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    17 February 2018 in reply to Croix

    Thanks Croix, I have been trying to read a bit but can't focus for too long. I feel like I need to be using my time more effectively. I have trimmed the hedge which looks much better. That doesn't count as a project as it is a short routine activity!! Last night I tidied the study which was overdue. I also pulled down a section of the shed ceiling. I decided to see if I could do it easily which I did. It was falling down & really annoying me as it made it too hard to access & put away tools. Maybe next week I can check that the rest of the ceiling is secure enough & then spend short amounts of time tidying up. Maybe that can be a chance to see if I can break things up into small tasks & work with my body rather than pushing too hard. I am sleeping a bit better at the moment The cooler nights & reduced pressure are helping.

    There is no way I could manage 2 weeks without doing something constructive. I would go insane. There is one big project I really want finished I am dreading it so I need to get it over & done with but I'm afraid that while doing it I will be really under pressure so I am trying to delay it for the 2 weeks. I know it sounds stupid to others but it has become such a strong part of my way of life Constantly pushing to finish things & then jumping into the next project.

  11. blondguy
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    17 February 2018 in reply to Elizabeth CP

    Hi Elizabeth

    Im sorry that I havent been on your thread for a while...a long while

    You are stronger than I am especially with having the willpower to do that bushwalk!! I really dont know understand where you summon the strength from...(I am envious)

    In form 6.....(Year 12) I had an elective subject I chose...psychology...

    The lecturer started our first class with one simple statement which stuck in my head since he said it in 1977...

    He mentioned " People dont know how to do nothing anymore" I was pre anxiety at the time but it has stuck with me. I too have difficulty 'sitting still' sometimes. My lecturer was discussing the mental health benefits of doing 'nothing' instead of constant occupation

    I am still working on it but slowly getting there

    Just sharing if thats okay Elizabeth :-)

    Paul

  12. PamelaR
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    17 February 2018 in reply to blondguy

    Hiya Croix, Elizabeth, Paul...

    And everyone else out there who wants to join this thread.

    Croix - just saw your response to me. LOL. Don't know how or why I've missed it. Glad to see you here.

    Elisabeth - doing nothing is my life. While I've worked all my life, i've always wanted to do nothing. Since retiring. I've done a bit, but i've done a lot of doing nothing. I think this is causing me my anxiety at the moment. But since I've had a change in thyroid medication I'm doing more stuff. Over the past week my husband and I have spring cleaned the house. Wow.... Still lots to do in the garden, but I'm pleased to be active.

    Paul, I have no problems sitting still. I can do that easily. I find that is what is painful for me. I want to do more, but find it so difficult to get the motivation to move.

    Interesting how we all have similar health issues, but our propensity for what we do, when we do it etc - differ significantly. Surely there is a research project in there somewhere. LOL. Very late on Saturday night after being out for a lovely dinner with my husband and a glass of champers.

  13. Elizabeth CP
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    19 February 2018 in reply to PamelaR

    Thanks Paul & Pamela,

    IPaul it is not about having the strength sometimes it s about being plain stubborn!!!I admired my dad & always tried to emulate him. He was always busy & independent. My mum had a few falls & then stopped doing things to avoid falling. I have tried to avoid following in her path. My dad had to be stopped from walking to the hospital after the GP decided he was too ill to return home!!! Later my dad questioned his diagnosis asking isn't it normally fatal. The GP said Yes You were lucky to survive. He actually died coming home from hospital by public transport as he didn't think he needed to ask me to pick him up!!!

    There is a fine line between doing too little & too much. We need to find a balance. I tend to push too hard & then rest when exhausted & then feel guilty for doing nothing. I need to find better balance so I can do the heavy projects that need doing but break them into more manageable chunks & be more effective at resting when required so I can be more effective. I also need to find things to do in between heavy projects which are satisfying but not stressful. My psych wants me to develop a more sustainable lifestyle & being better able to adapt to the future particularly as my husband deteriorates. He wants me to find things to do that will give me a break from my caring role. I have a habit of copng with my negative feelings by pushing myself to do things to feel successful & blot out negative feelings but this only provided short term relief & often makes things worse.

  14. PamelaR
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    19 February 2018 in reply to Elizabeth CP

    Hello everyone

    Elizabeth, your last sentence...... copying with my negative feelings by pushing myself to do things to feel successful and blot out negative feelings. Yep, can relate to that totally.

    That is sad about your dad not phoning to pick him up. Now I wonder were your stubbornness comes from. I'd imagine you feel responsible in some way too. It so unfortunate he wanted to be so independent. Sending hugs your way Elizabeth.

    I like your psych's suggestion about finding other things to do. Do you have any hobbies or interests? There are many things out there to do. It's making those first steps. For instance, I want to get back to mosaicing, but I keep putting up the barrier - I need a group to work with. Well I did a google search and did find one group, but that's as far as I have gotten. Haven't made contact yet.... Still thinking about it :) So maybe we should make a deal between each other that we'll take active steps to find out more about things that interest us. What do you think?

  15. Elizabeth CP
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    19 February 2018 in reply to PamelaR

    Thanks for your reply. I would like to get back into ballroom dancing. trouble is I feel bad going without my husband but going with him means I am still in caring mode assisting him. He is blind so he can't see what the instructor is doing but if I could get past this maybe it would be good for both of us.

    I also enjoy bushwalking but that was something my husband enjoyed. Unfortunately walking with him means watching out for him & assisting him as needed. I think I should try to find a group so I can go on my own as a break. I can still walk with him other times.

    I will take up your challenge & find a group I can go with if you try to join a mosaic group.

    My dad died a long time ago. I still miss him but he died doing what he wanted. We found treats for mum & him in his bag that he bought on his way home so I try to think about him enjoying picking out their favourite treats. I also like to think of him greeting his parents & other loved ones who had died before him. I replied on the PTSD thread but my reply seems to have disappeared.

  16. PamelaR
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    19 February 2018 in reply to Elizabeth CP

    Thank you Elizabeth. Yes, interesting funny things happen on these threads. Never mind, the upshot is we always find one and another - that's the important thing!

    Okay, you've set a challenge for me. I'm up for it. Will let you know when I've joined and had my first class :)

    Are you eligible for respite or a carer who can accompany you on hiking trips to lessen the load for you? I absolutely know what you talking about. My brother is legally blind and I have a very stressful time when we go out. It's not easy. So I can empathise with you.

    Sounds like you have some lovely memories of your dad which is nice. It's great to have these and hold onto. Your right about him meeting others once he lives this world.

    Have a nice day tomorrow.

  17. blondguy
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    19 February 2018 in reply to Elizabeth CP

    Hi Elizabeth/Pamela....you are spot on saying there is a fine line between doing too much or too little for sure

    My lecturer was only mentioning that many people (even without a mental illness) cant stop and do nothing instead of doing everything possible to keep busy. Just for me I take pride in having quiet time doing nothing after I have finished a task or even posting on here for that matter

    I find it weird that I can remember exactly what this guy said in 1977 lol.......I probably needed to hear it as I was always a super busy guy that felt bad if I wasnt

    My kindest as always

    Paul

  18. PamelaR
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    19 February 2018 in reply to blondguy

    Hello Paul and Elizabeth

    Yes Paul, I know what you mean about having a rest after posting. I also need a rest after editing photographs. For some reason it takes it out of me and I feel exhausted. Once I've rested for a bit I'm okay.

    Thanks for posting. Good to see you around.

    Cheers

    PamelaR

  19. Elizabeth CP
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    19 February 2018 in reply to PamelaR

    At the moment I don't have respite but may get some once he gets on the NDIS. Having a carer come with us doesn't seem practical. The other big issue is my husband enjoys bushwalking & wants to do as much as he can when he is well enough. Once his condition deteriorates further it will become more difficult. There are signs that his muscles in legs & arms are now effected so doing as much as possible now is important to maintain strength as far as possible, His swallowing & digestion is already affected so I need to ensure that is managed particularly on bushwalks to ensure he gets enough fluids & food to cope.

    Yesterday a tree was blown down in a storm & landed on the fence. My husband is concerned about the fence being damaged & wants me to help him move the tree. This is making me feel very anxious. It is too heavy to move & I'm worried that we may drop it while trying to move it & do more damage. Of course the fact that my husband can't see what he is doing makes it harder. He wants to cut off the branches with an axe once it is moved. Visions of hospital visits to repair injuries are causing more anxiety. I don't know where to turn to get help. I know this is a practical problem but it is causing great anxiety

  20. PamelaR
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    21 February 2018 in reply to Elizabeth CP

    Hello Elizabeth

    Sorry I haven't responded sooner. I've read some of your details and others over the past day and a half. It's made me realise how lucky I am having such a wonderful husband. I've been feeling sad for you and others, and the difficult lives you have. Mine is so easy in comparison and I'd really like to provide some good support to you and some of the others.

    I do empathise with you. Especially when your husband isn't wanting to face the practicalities (realities) of his situation. And also his situation. It is sad. I know, my younger brother has gone blind and I want to try to help him learn to live in a diminishing visual world. It's compounded for him because he is also going deaf. All very sad. I am able to leave my brother at the nursing home. But I still worry.

    I can completely understand your anxiety caused by your husband wanting to cut down the fallen tree! Oh my. I hope this has been resolved. I'd hide the axe, saw etc and turn the electricity off at the mains. Then deal with the fall out of those by claiming - ignorance. Hope it doesn't sound like i'm making light of your situation. That's not the intent. It is a reality you possibly have to start to make.

    Calming your husband's anxiety is going to be the most difficult I'd imagine. Unfortunately I haven't got much in the way to help you through this. My main response to my brother is to get angry which is unhelpful for him and for me. I go away feeling a failure. The biggest thing for me is to realise - it's not my fault. He is in the situation because of many things, nothing to do with me.

    I hope you are eligible for respite under the NSID. You do need it. Sending you hugs and good energy.

    PamelaR

  21. Elizabeth CP
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    21 February 2018 in reply to PamelaR

    Thanks Pamela, I decided to ring the SES while my husband was out & they moved the tree off the fence. Part of the tree was overhanging the footpath so it was a danger to passersby which meant they were prepared to help. The tree is now in the middle of the back lawn but my son will come on the weekend to help saw it up. At least it is no longer urgent so my husband is happy to wait.

    My husband was always very active & prepared to help anyone who needed it so becoming blind has been difficult. The advantage of his stubbornness is that it has pushed him to try things & learn to manage as well as he can with his disability. Unfortunately the things we had in common are now the things which are difficult. I had hoped we'd have time once we were older & the children grown up to pursue them again.

  22. PamelaR
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    21 February 2018 in reply to Elizabeth CP

    So glad to hear your fallen tree is solved!!

    Not being able to do the things you had planned on must be disappointing.... I can relate to that. When we retired we were always going to go grey nomading. Unfortunately, I don't think it would be good for either me or my husband. I'd have to do all the navigating (even if we had GPS0) - that would be extremely stressful for me. Don't want that. So looking at more local stuff we can do.

    Your husband must be feeling terrible. I know my brother does not want to admit he's going blind. I generally have to ask subtle questions about - oh, can you see that person over there etc. Also, I understand and empathise how difficult it is for you. Especially their denial.

  23. PamelaR
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    21 February 2018 in reply to Elizabeth CP
    Just letting you know Elizabeth CP - I've sent a email off to a Mosaic class. Should start in March!!!
  24. Elizabeth CP
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    21 February 2018 in reply to PamelaR
    Good on you!!! I've been caught up dealing with the tree & had to babysit today. It was just one child who is OK on his own although he wants me to do things with him the whole time.
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  25. Croix
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    24 February 2018 in reply to Elizabeth CP

    Dear Elizabeth~

    I liked the fish and tree metaphor so much I popped it in the Quotes That I Like thread, hope you don't mind. I thought it was spot-on and others would appreciate it.

    Croix

  26. Elizabeth CP
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    26 February 2018 in reply to Croix
    Thanks Croix, I'm glad you liked the fish & the tree metaphor. I was starting to improve early last week & started to get some energy back but crashed badly again. Felt unwell Friday while babysitting & then exhausted ever since. A little better today but still emotionally fragile & feeling useless!!! I need to try to do something I started earlier before getting interrupted otherwise I will struggle further. I'm not thinking very logically ATM so will need to post later when I can think straight
  27. Croix
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    26 February 2018 in reply to Elizabeth CP

    Dear Elizabeth~

    I'm probably doing you a terrible injustice by asking this - but you did not leap into a big demanding task straight off rather than easing your way back in with more modest targets?

    No, of course you wouldn't do anything like that🤞

    Croix

  28. Elizabeth CP
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    26 February 2018 in reply to Croix

    I have been anxious to get on with another task but wanted to plan it carefully so I could manage it effectively. Unfortunately plans became messed up. A tree blew down a week ago & was leaning over the fence. It needed to be moved but was too difficult for me but my husband decided we needed to move it. That triggered a lot of stress as I was concerned re the risk of injuring ourselves or causing further damage. In despiration I rang the SES & they helped as there was a risk to passersby. Myson cut the larger limbs up with his chainsaw later in the week but I needed to mulch the small branches & leaves while it was fresh & would mulch easily. This took a lot of time. Then I needed to babysit Wed afternoon for my son. Then my daughter needed me to babysit Friday. That was a long day leaving early & getting back after 9.30pm. The grandkids kids were well behaved & I enjoy spending time with them but I was feeling unwell & exhausted. I'm a lot better now but still more tired than normal. Today I tried to start a project but things took longer than expected but I also had other demands which I didn't expect.

    I am going away next Friday on a 7 day cruise which should be relaxing.

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  29. Croix
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    26 February 2018 in reply to Elizabeth CP

    Dear Elizabeth~

    Well I guess your fish is going to need a new tree. I'm glad you thought of the SES, a neat way out of a tricky situation.

    Hopefully you will get a chance to rest the back, and take things at a calmer pace on the cruise. (Ships of that nature normally don't need cooking facilities changed or re-roofing)

    Croix

  30. Elizabeth CP
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    Elizabeth CP avatar
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    26 February 2018 in reply to Croix

    Yes I think the ship's staff might get upset if I started ripping out kitchen cupboards to rearrange the kitchen or pulled up the bathroom tiles to replace them!!! Once I've shown my husband around he should be fine. If he gets lost & I'm not with him he can ask someone. I'm just hoping it isn't too hot too explore onshore.

    I think my fish has enough trees for this week. I have a lot on I just filled in the hole in the lounge room brick wall ready to paint. At least it will be ready once I finish smoothing the edges. I decided that laying bricks was too large a tree for this fish so I cheated & used chipboard. It is hidden behind a settee anyway & I couldn't justify the effort & very high risk of me doing a terrible job. My brother said he'd help but I had to wait till he finished his living area which would be weeks but more likely months & I couldn't wait. I also felt bad expecting help from him when I know he is under a lot of pressure.

    I hate my dark brown brick wall as it makes the room dark & depressing. I've found in the past that colour affects my mood. Years ago I had a bedroom decorated in browns & creams. I liked every element in the room & it had a lovely view but I noticed I was depressed & it was worse when I spent time in my bedroom. I changed the floor covering & bedspread to blue & my mood improved significantly. Dark rooms also lower my mood. I have wanted to do something with the brick wall for several years but haven't had the opportunity. I'm trying to be sensible so rather than attempting the whole room at nce I'm doing the brick wall first probably just the undercoat this week. Then I'll attempt the rest. Hopefully this will make it easier & going away will take my mind off it. I painted the ceiling last year so that will reduce the work required.

    I'd better go & do my walk while my filler dries.

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