Hello everyone,me again. I got up this morning feeling like i wanted to do something. Thought i would help hubby tidy up. I made a start and did a bit then i sat a bit and repeated that all over again. Same result ended up sweating and in tears because i wanted to give the living room a good degunge. Good howl and an hour later still sitting down. I know if people don't like it they can do it themselves,but i do have my pride and i like my house to look nice. My house is not filthy or anything like that,just lived in and sometimes a bit untidy. Well i have given in knowing that if anything happened to hubby i would have to pay someone to clean for me. He is a darling he really is,but he is a man and you know they don't do it like we do do they. Anyway the living room is looking reasonabilly clean and tidy. Hubby has been down the allotment and got the vege for lunch and some strawberries for sweet,so i can't complain can i.
These are the roses growing on my back fence. Hugs for you all.xxx
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sylvi
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Hi Sylvia, well I think we are all the same really, go at things like a bull in a china shop, then suffer for it big time after ! I do things for five minutes, then sit for 15 minutes these days, one step forward, three steps back !! I like you get very frustrated about it all but try and plod on. Right now I am sitting here with my iPad. All I have managed to do this morning is change the bed (with kens help), wash up and have a shower. I am bracing myself to get in the kitchen and make a cake as my 90 yr old dad driving over 20 miles for his weekly visit and he always has his cake and scones !
The thought of baking today fills me with dread as I am completely exhausted. Oh, then there is tonight's meal to think about as well. Ken is a hopeless cook so it all falls on me, he does the veggies for me as my hands are so bad, then I have to do the rest. I plonk my backside on my perching stool in the kitchen and call for help when I need it!!
Most of my family have no idea how poorly I feel or how much pain I'm in, but they are getting there bit by bit, mainly because I let them know much more these days just how I feel. I have to say I am a right moany thing these days, but it helps to let off steam !!
With hubby being hospitalised few times now I realise how vulnerable I am. For instance the car parking at hospital was totally beyond me, there were never any disabled places available near the ward blocks, so just visiting him was a nightmare as I could not manage the walk, or push myself in my wheelchair. In the end if family could not take me I used taxis, but that was also difficult because the vehicles were either too low,or too,high and getting in and out was very difficult. Then while he was in hospital I swiftly realised how much I depend on him for many things. Silly things like fastening my shoes, rubbing cream on my back which is covered in psoriasis, getting things out of high shelf cupboards, helping to get me dressed etc etc. then there was taking the bins out, watering the garden and things like that.
If anything happens to Ken I would definately have to move to an extra care apartment or similar and pay for any help I need, I would never cope on my own.
I have just bought a powerchair and have a powered hoist in the car. I can easily manage this so it'll keep me bit more independent I hope and will help me a lot if and when Ken is in hospital etc.
My lovely neighbours cooked my meal every day ken in hospital, they were so kind, and they knocked on my door couple of times a day to make sure I was OK.
The thing is, I will keep pushing myself to do things even though I know I'm going to suffer for it because if I don't, I shall wither away. Like you, I'll have a good howl now and again - it does me blooming good to get some of my frustrations out !!
I get angry with this wretched disease for wrecking my body and my life, but it isn't going away anytime soon, so the fight goes on !!!!
You are doing your best Sylvi, have a bawl, have a moan, but keep going (well that's my mantra anyway).
I just wrote you an answer and lost the lot so i will try again. Your reply Lynda hit the nail on the head. I never expected him to be the one looking after me,i always expected i would look after him. I should have known better if i had looked back at my parents as my mum was disabled when i come to think about it. I dread to think what will happen if anything happens to him as i would be not only so lost but who would look after me and would i have to sell this lovely house we have created together and my garden, well that doesn't bear thinking about. I love my little garden and the thought of having to leave it is to much to think about. I suppose the day will come when i won't have any choice in the matter.
I won't give up just yet,but the thought of spending the rest of my life in pain and exhaustion doesn't bear thinking about. I am not a suicidal person,but can quite understand someone who does because they can't stand the pain any longer. This is why i colour my hair and nails so if i am out and about when i am having a bad day and someone talks to me about it, it means i have to speak to them and in doing so helps me overcome my misery,well thats what i think anyway.
sorry to read you are having trouble, but like me you keep trying to do something. I am same never give up. As long as you do what you can , i always say. My house filled up today i had four generations in here at one time. Daughter, grandson, then later great grandson came in with his Dad (is it Great son-in-law). Plus my two sons who came for dinner. Grandson stayed as well as he fancied what i was cooking more than what his dad was cooking. (That is another family at the moment who relys on dad to cook and clean as my daughter is having treatment for Aplastic Anemia) . Her husband was doing some tiling for my son who has just had a kitchen extension built and is trying to get the units fitted. My daughter didnt want to be on her own so she came here for a while. I had'nt got enough to go round so i fed the ones i could. So yes i over did it again also, now sitting down for the rest of the day. Will get up to do tea later.
Keep your chin up you are not on your own, as long as you try.
I too paint my nails but hairdressers won't colour my hair as she says it's too fragile from the steroids but gradually improving as I reduce the dose. I was only diagnosed 12 months ago and gradually coming to terms with it. Hope you improve enough to be able to help you. Hugs
Yeah I know what you mean. I have been paying the price for doing too much in the week - when will I learn to pace myself?!? So I may not have done anything in the garden this weekend as I'd hoped to - too sore & tired - but the flowers still looked great. Though I have to say Sylvi my garden is not a patch on yours. Your beautiful photos always bring a smile to my face. Keep posting them please.
I'm nowhere near as bad as many of you. I live alone and work full time, but when I get home I do virtually nothing. Some days I don't even cook a dinner or I resort to a ready meal (usually have a couple in the freezer). I have recently arranged for a gardener to come every 2 or 3 weeks as there's no way I can cut my grass so at least that gets done now, the rest is a mess. I could do with a cleaner but can't afford one. I try to keep tidy as I go along as there's only me here and sometimes do some dusting and very occasionally I vacuum. I also take my elderly mother food shopping every Saturday and to the crematorium to do flowers every other week. I wanted to cut my hours when I was to receive my state pension but that has been put back to 5 days before my 65th birthday, so just over 3 years to wait! I too sit and have a good howl at times - sheer frustration! I feel guilty about complaining as my symptoms are not as bad as many. Have hospital appointment tomorrow as my latest problem is not TMJ so had to be referred elsewhere. Hope you all feel a bit better in this glorious weather and keep on howling!!
Your pain is as bad as the rest of us,it doesn't matter who is worse than you darling, you suffer the same as others do. We all know how you and others feel we all suffer the same in our own ways. Get your gardener who cuts your grass if he will tidy the rest up for you as it will make your life a little bit happier if you don't have that to worry about. As to the housework,Try and put some stuff away so they won't gather dust then there is less to do for you darling.xxxx
I believe it's important to have a "why me!" day every now and then - I usually have a "bed day". You then wake up the following morning feeling more positive. I live alone as well and have to do everything - and so some things don't get done! But I won't let it get me down - had RA for nearly 25yrs and I always feel there's someone worse than me so I can't let myself feel down for long x
Just had to struggle home with my scooter as it had lost it charge. I managed to get it home but had to walk some of the way and now i am cream crackered and just had a howl on hubbys shoulder as i couldn't get hold of him and i was so worried about getting it home as it is not a little one. Never mind i am home now thank goodness.xxxx
"sweating and tears".......oh god I do remember it all so very well.... I'm doing quite well at the minute but believe me I do know just what that is like. Your lucky as you have your lovely sounding hubby to take up the slack. I live alone, well except for my two four legged friends, and if I can't do it it simply just doesn't get done. I've learned over the years to turn a blind eye when I can't manage, I had to or I would have driven myself mad and madness along with RD really doesn't sound like a situation I want to try to live with!!! Having said that I have had my moments....
I make life as easy for myself as I can. When I was in one of my 'doing really well' stages I set out to declutter my entire wee bungalow and ended up with black bin bags full of sellable items for my Animal Rescue Charity Shop. This s an ongoing thing though as i keep buying more useless things to take the place of the original useless bits of nothing that we seem to collect (I'd swear they multiply in the middle of the night when I'm not looking!). At least my Charity Shop of preference is doing well out of it.
I did away with things that need dusting every other day.....less is always better, isn't that what the designers say? Gradually I bought white furniture that doesn't show the dust as much as dark........its still there you just don't see it!!!! I bought an extension feather duster, a must for people like us and a rechargeable, cordless, light weight vacuum cleaner. Another thing I did was to bring things down from the top shelves in my kitchen. This has done away with any kind of stretching that many times resulted in me in a flood of tears and exasperation at not being able to do the sort of things that others take for granted. I live in one room as much as possible too. My bedroom, bathroom and kitchen I use minimally so that the cleaning and maintenance can be kept to one room as much as possible. This may all sound a bit hermitish (spelling??) but I'm only giving suggestions here and have done what suits me and my lifestyle. I appreciate it must be different with families than with living alone.......but the feelings of uselessness, frustration and sometimes anger are still very much the same.
Another thing that I have allowed myself is that when I can afford it and I am simply not able to do it myself I have a grand girl who comes in when I send out a distress signal......HELP NEEDED ASAP via text.
No matter what you do just allow yourself to wait it out when you'r not up to it. There will be another day and of course there is always the lovely hubby......you lucky, lucky girl. Hope your feeling better soon. XX
I am tattered now i have just got the washing of the line,hubby has cut the back grass and now all i need to do is get my rocker outside and then i will sit in it and read the paper.xxxx
Oh dear Sylvi, you do really need to get your pain under control. The world seems a lot brighter when it is, believe me. You also need to get a GTech Air Ram..... I still can't believe I can vacuum one level in my house in one go, it really is my latest "must have" gadget. It's so satisfying that I can do that one thing myself & with 3 dogs I can't leave it too long! Oh & I agree with Jean, don't have anything more than necessary out that needs dusting, half of my house is still in boxes in the cellar from when we moved back. When we move again I don't intend getting much of it out so my chosen charity will have plenty to go at!
Do make a double appointent with your GP to go through your options. It's what I did, though mine was OA Pain as my RD is reasonably well controlled but the difference, well I wouldn't want to be without my 3 pain relievers.
Rest when you need to, no need to feel guilty & as my mum always said sleep is a great healer & if you need to sleep more often then it's your body telling you something. I've been doing more of that recently too. x
I don't hoover darling,hubby does that though i can do it, we have two hoovers one up one down. We have had the family round as its my daughters birthday and i didn't do anything apart from getting the parasol from the loft. It has been a lovely afternoon evening with all my family round here .xxxx
That sounds like a lovely afternoon & just the weather for it. Wish your daughter a happy birthday if she's still with you. Sounds like you've got a good 'un there, keep fast hold of him! x
Sylvi you sound a fantastic lady and I admire your determination and your beautiful roses. Wow why do my roses not look like that!!! I can understand you getting frustrated, I've been a bit down about getting a mobility scooter, as I am only 45. But the only way forward is sometimes just to accept we have limitations and make the most of what we can do even if it's just sat admiring the garden.
Well Metal-legs i don't do anything with them they just come up each and i just dead head them and thats it. I didn't want a scooter and i hated it with a passion,but without them i would be housebound. So put your pride away and get one and go out there and show the world your still alive despite your diseases.xxxx
Thank you Sylvi. I've only had my scooter a short time and like you I would be housebound without it. I love your "show the world you're still alive" spirit, I will think of you on my scooter.
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No inflammation showing on my ultrasound so why do I have constant pain in my feet and hands? 
How do people find Amytriptyline?
We can't do anything to help...
update did i realy do the right thing?
