Old Style Ways and Poor Health part 2.

MingVase

EEEEEEK!! - remind me never to build a bower. No creepers,  either with roots or legs.

KxMx

I did my research and got advice from various sources for 2 months before applying for social housing, I don't live alone and am not on the tenancy here and cannot afford private rentals- even if I could find a LL that would take a 100% benefit tenant with no guarantor. You only have to look on the housing board to see how working people needing only a small benefit top up find it very very difficult.

If assessed as needing ground floor and level access bathing that is all the system will allow me to bid on, there are ground floor flats with level access bathing advertised roughly every few weeks.

The system also allows you to view recent lets with number of bids, which band was successful and how long they had been bidding for so it gives me a good idea. I am not expecting it to be any quicker than a few years minimum.
Demand far outstrips supply and while I do need to move for medical reasons there are a lot of people in much greater need than me.

According to their guidance OT assessments are usually only required for those seeking wheelchair adapted properties so I didn't foresee needing one myself, but of course I go along with what they want me to do.

The good news is I finally had a reply from them this evening saying the wait for an assessment will be months rather than weeks- why they couldn't tell me that 5 & 1/2 weeks ago I have no idea.

I could also tell you a real horror story about a friend dealing with the same department, all I will say is I had no idea a vulnerable person with dementia needing to go into a care home but unable to self fund would be treated in that way. Nor their family. 

3secondmemory

Hi all! 

It’s been quite a year hasn’t it, Pollyanna? This time 12 months ago, my son had Covid19 and we were counting the days. He’s recovered, engaged, saving for a house deposit and about to buy a new car, so I can expect a visit soon 😃

i’ll be down to Devon to see my pregnant daughter as soon as I can but, apart from that, I’m very content spending my time at home. I never thought I’d hear those words come from my mouth! 

Grumpy old cat is my only cause for concern. She coughs a lot - I bought a grooming brush and some hairball paste so will see if that helps. If not, it’s a highly inconvenient trip to the vets with a foul tempered cat which I don’t look forward to! 

I’m glad of the long weekend – even though I don’t do anything all week, I still need a break 😂😂 exhaustion is still a big factor but I’m wondering if living with two cats isn’t rubbing off on me 😂😂

I hope everyone has a good weekend and finds something satisfying and productive to do. Or just satisfying 😃

mothernerd

Well I finally made it here. I didn't have this thread bookmarked and have never posted on here before (only on part one). I'm mothernerd. I've never been diagnosed with MS/ CFS etc but I am most definitely knackered. For about ten years I supported myself and my 3 boys by working as a cleaner (which anyone who has ever been to my house will tell you, is an absolute joke). I worked many many p-t jobs and have done 70 hour weeks. I've never had a car and everything that came into the house, came in the large rucksack including trees, bags of sand and cement when I was rebuilding the back wall and years and years of shopping. As anyone who has done physical work will tell you (firemen, nurses before stricter rules on lifting were introduced) it takes a toll and due to frequent changes in pension rules, I have another 3 years to wait.

I also have serious long-term depression, PTSD following an accident when DS3 was 6 months old (both of us were there) and probably again following the death of my brother when he was 47yo and I was 49. I have issues going back to childhood (I think I've been a grown up since I was 3) and a life full of the 'traumatic' events that are most likely to tip you over the edge, often several at the same time (when I found out I was expecting DS1, my grandmother had just died,I was on the verge of leaving the baby's father, was moving back from his house to my house, had been unemployed for a while after a temporary 'scheme' job finished (job was horrible especially for the final 3 months but the fallout led to an eczema/ dermatitis outbreak which left my hands as claws - had to peel potatoes with a ball of crumpled newspaper in my hand). Never had a diagnosis on the second PTSD episode but recognised all the stages. I was hoping to return to f-t work, so refused to take anti-depressants for a few years (had a very bad experience with one I'd tried). Now I'm on a largish dose which allows me to get up every day (could have more but side effects would increase). Everything else is up to me - I manage  to be happy each day.

After my brother died I set up my own small business, months before the financial crash of 2008. I never made much money but it allowed me to put the hours in on my 'good' days and stay under the bedclothes if I needed to. I was fine sorting out my brother's estate, dealing with solicitors and negotiating with the Inland Revenue but would collapse into a puddle in between. It was 3 years before I had help dealing with my grief. All the focus was rightly on my mother, but her insistence on dead brother's 'near sainthood' meant I was unable to talk about my 'warts and all' brother.

At the age of 56 I had to have a total hip replacement. Diagnosis came after months of physiotherapy - the third time I was to be discharged, I stood up when my name was called and couldn't move. I could not take the step forward that would put weight on the injured leg. Physiotherapist's boss (who was there to sign off on me being discharged) went to get a wheelchair and I was referred for a scan. even then when the physio asked me about my pain I said 7. He was incredulous, I had been unable to move. I said that my body was protecting me - if I had managed to step forward, then I would have collapsed to the floor in agony.

When I had my hip operation, there were no signs of arthritis anywhere else in my body. I turned 60 and my right shoulder gave in and when I was having an injection for that, the doctor confirmed that the 'slight problem with my knee' would also develop into arthritis. The same month I received my 'poo pack' (bowel cancer test) and boob squash appointment and I started to feel like an old crock so went back to having 'creaky knees' and a slight problem with ........ ( just felt better with that view of myself). In recent years it's been a race between my eyes and my hands as to which would go first (lots of cramps in my hands recently but not sure if it's arthritis or just from wielding the paintbrush). Latest eye exam said I wasn't going blind, just yet so all is good.

The months before and after my hip replacement taught me how to pace myself, alternate standing and sitting jobs and do everything I could do, sitting down (I was trying to up the large house for selling and was still going up the steps when it took me longer to get up them than I was able to stay up tackling a particular job. When I got back to my original little house (DS2 and a friend were renting it off me for a few years) I spent months tackling the ivy in the yard which DS2 had let grow to tree proportions. The arthritis in my shoulder meant putting plates away one at a time, keeping my hair short and various other changes (my future dream kitchen has lots of drawers that glide in and out).

Two years ago I got a CPAP machine which has improved my sleep dramatically (I stop breathing over 60 times an hour when I'm asleep, so never got to go into deep sleep) but has increased the number of minor side-effects caused by medicines which impact on other conditions.

For the past few years I have been my mum's main carer. I am at her bungalow 3 or 4 days a week, from lunchtime until 7 pm - 9 pm (usually earlier in winter). I organise deliveries/ shop, cook, do diy, tackle the garden go to all her appointments with her. She has a cleaner once a week who also visits on Saturday's, so there's someone with mum nearly every day. I stay overnight when we have an early appointment and if she's ill she phones and I move in for a few days. Other people know to phone me if they think she needs me there. In March last year I moved in for the duration of the 12 week lock down. This was then extended and when it ended we went almost immediately into a local lock down and then the highest tier. So 13 months on I'm still here and not allowed back in my own house (might be allowed in my yard again).

We wouldn't have chosen to live together, it's not necessary yet. Mum has myasthenia gravis and is ECV. The messages her brain sends aren't strong enough and without the medication she would slowly starve to death as swallowing anything gets progressively harder throughout the day. She spent a month in hospital whilst they adjusted the dosage and came home a few days before I had my hip op. It can be inherited so every few months I do something I call 'flappy bird' (bit like the chicken dance but with my arms in front of me and more repetition) so that I can have early warning if I start to get symptoms. In addition she has had shingles, had cataract ops on both eyes, shingles came back and attacked one of her eyes so is now blind in that eye. Apart from her jabs, a couple of appointments and one or two walks as far as the post box mum has not been outside for 13 months.

I did a few trips back to my own house early on to bring garden containers here but when the pubs were allowed to open I stopped (about 11 pubs and takeaways between the two houses). In autumn I ventured into town early to buy a few things that could not be delivered and have been inside my own house twice (when it was allowed). Once to collect winter clothes and other things that DS3 could not find (DS3, his Beloved and the 3 grand-chinchillas - they are chinchillas, not a cute name for children - live in my house, usually with me but not recently - oh the messages I had about the census and voting cards). A second time to gather tools and other heavy  items which someone had offered to collect in their car.

Mum and I have mostly got along (we love each other but are so very different). I added the cleaner's duties (but mum decided she would not pay me), covering for district nurses (successfully treated mum's leg ulcer and improved the general condition of her legs), got her to eat a lot more vegetables and trimmed her hair once. Luckily the window cleaner restarted his round the day before I was going to do that. I've been growing veg, insisted on having a polytunnel from the start (but mum decided where it should go) and that helped keep me sane - it's a very small bungalow. 

In winter we were both ill (minor things but debilitating), couldn't do a lot, we became very niggley with one another. I decided one of us had to be the grown up so stopped answering back (laughed/ shrugged it off and retreated into 'my room' when all else failed. Got myself back on track and then this past month has been really hard. Mum seems determined to complain and will invent something when there is nothing to complain about. She's also been commenting every time I put something in my mouth, so I'm mostly eating in my room. I know I'm overweight, I know a lot of things would be better if I weren't putting so much pressure on my joints etc, I was using the weight management service before lock down and continued to lose weight at the beginning. I don't need mum's constant sniping - honestly you wouldn't talk to a dog the way she talks to me. I am an emotional eater and I need to focus outwards as I'm in danger of closing down and then it's so much harder to go outside again.

I promise the next post will be much more positive but I think I need to go and shower.

3secondmemory

@mothernerd - I can relate to a lot of your post, in fact I started to feel quite overwhelmed which triggers anxiety for me. All to do with CPTSD. I just keep breathing. 

I hope things improve for you. Is there any help you can get with your mum – just so it gives you a break? 

3secondmemory

I’ve just realised it’s Friday today, not Saturday. All that talk about the weekend confused me 🤦‍♀️ 

pollyanna_26

3secondmemory said:

I’ve just realised it’s Friday today, not Saturday. All that talk about the weekend confused me 🤦‍♀️ 

I have spent over a year wondering what day it is, sometimes what month it is. Really weird not to be in the regular pattern we knew.

I am finally heading to see youngest today after plans kept changing. Her post 2nd jab migraines have finally settled down but she's had very painful swollen neck glands. According to science that's a good sign. Having to stay off the MTX until she had both jabs it seems her immune system is working to some extent.

Hope you all have a good day, grumpy cats or not. I'm looking forward to the long weekend. Too many long sleepless nights lately. It's sunny but cool here, Big coat day methinks.

Will catch up later.

pollyx

3secondmemory

pollyanna_26 said:

3secondmemory said:

I’ve just realised it’s Friday today, not Saturday. All that talk about the weekend confused me 🤦‍♀️ 

I have spent over a year wondering what day it is, sometimes what month it is. Really weird not to be in the regular pattern we knew.

I am finally heading to see youngest today after plans kept changing. Her post 2nd jab migraines have finally settled down but she's had very painful swollen neck glands. According to science that's a good sign. Having to stay off the MTX until she had both jabs it seems her immune system is working to some extent.

Hope you all have a good day, grumpy cats or not. I'm looking forward to the long weekend. Too many long sleepless nights lately. It's sunny but cool here, Big coat day methinks.

Will catch up later.

pollyx

Mxt did wonders for getting my MAS under control - I took it for a year , it was hard going! 

I treated myself to a duck down jacket in the Millets closing down sale – £110 down to 30. It’s gorgeous and so lightweight. I grabbed a few other bargains – two fleeces for £22 and 2 resin camping tables for £20. I’m going to spend the rest of the afternoon out in the garden, protected from this vicious wind 😂

My beans and peas are ready to go out but I don’t trust the weather yet so I’m going to get on and build some frames.

I feel like I’ve been given a bonus day 😂

KxMx

I had some good news today.

Due to the delay with OT the Social Housing provider has been very gracious and given me Band C on the strength of current medical evidence.

Once I've had my assessment they will look at upgrading me to Band B.

So now I can start the bidding process and start on the list making of everything I will need... 

mothernerd

Okay, one positive post.

1)   Ditch any guilt. If shortcuts (they are not cheating) help you do something, take the shortcut. You only have so much energy and ideally you should use this for fun activities. One of the posters on the original thread said if using a jar of sauce means you can make a meal for your family, that is fine (we don't need to be old style purists, even if that is where our hearts are). It took me 12 months to accept that having a bag of frozen onions wasn't being lazy. Chopping was getting difficult and onions were the hardest to do (price difference is negligible). The penny finally dropped when I realised that 9 times out of 10, chopped onions is where I start. Problems with chopping meant I was finding alternatives to cooking from scratch. Now because I'm not forcing myself to do it, some days I can chop onions (not as finely or neatly as I used to) other times I'm happy to use frozen ready chopped. Can't do French onion soup anymore but Baxter's is a reasonable substitute (one of the things I'd have in the cupboard for winter and those days when you're so ill you can't stand up). I do make soup from scratch but have some soups, rice puddings, etc for too tired times (57 takes me back to childhood so I feel 'cared for' and knorr reminds me of the woman who looked after me when mum went back to work).

2)   Do as much as possible sitting down and alternate standing and sitting jobs. I once worked somewhere that we were forced to work standing up and one of the older women would stand on a layer of cardboard - it eased the pains in her legs caused by standing on a concrete floor. Don't do things that aren't necessary. I haven't ironed for years except for doing the pressing when I was sewing my own clothes. When my sons wanted to start wearing shirts, I taught them to use the iron. I believe my old 'Superwoman' book suggested just ironing the collar and cuffs because they were the only visible bits under a business suit that is worn all day. I fold or hang things straight from the line. Towels should not be ironed - it flattens the pile and makes them less effective (best to think of it as exfoliating if towels are slightly rough) and I think women who iron underpants should be taken out and shot.

3)   Last month was rough. Mum messed up one of her essential pills and I ended up doing a 3 taxi, 1 bus marathon to sort it out (and get flowers for 2 people who were on the sick list at her church) after I'd already done several hours in the garden, moving soil. As I stepped off the bus, something 'went' in my foot, I only got round the SM by clinging desperately to the trolley and it affected my mobility for most of the month. It happened on the 8th and I walked as far as the post box last Sunday and two evenings ago I walked very slowly to the SM (have mostly had deliveries and been trying to stretch them to 9 - 10 days but three times I've had to do an order or shop when I hadn't planned to, because mum had run out of something).

4)  Because I now have loads to do and was delayed last month (did a lot of painting sitting at the old dining table in the yard) and don't know quite where I am up to with things, I'm going to start May in 'crisis mode'. The essentials are food, clothes and bills and we tackle them in this order - Today, This Week, Rest of the Month. Everyone needs to eat, most of us need clean clothes (I've been wearing out clothes that have developed holes during lock down and I did used to have odd days when I'd stay in my nightie - big t-shirt type and it covers the essential if I have to go out to the bins or washing line). Bills I interpret as anything urgent (bills are mostly paid by standing order) so a letter that must be posted , an appointment, putting the bins out for collection.

So for today I have one portion of lamb curry (will add extra peppers and either mushrooms/ broccoli when I cook it) and I made a pasta bake earlier in the week using past their best veg and cheese that went ood on January 28th (it hadn't been opened and I gave it a quick wash under the cold tap). So that's today and tomorrow taken care of. Lots of bits if I want a sandwich or snack. There is a foil wrapped parcel in the freezer that is either beef or lamb so that will be for Sunday lunch with maybe a casserole or curry with any leftovers. Mum isn't feeling great so has mostly been having soup (and a lot of custard with tinned fruit) but I did tell her there were 6 portioned out meals in the freezer for her (2 pasta bake, 2 chicken in black bean sauce, 1 chicken curry - both of those have rice in the same container, one veg soup or broth). I'm not batch cooking anything else for her until at least some of those have been eaten. After that it will be time for another veg round up and more meals for through the week. I've been using up odds and ends from the freezer and adding things we've finished off to the shopping list. I've retired my old painting clothes and identified two dresses suitable for painting, gardening, building (plans for the month) so I'll mostly be wearing those, and all my nicer dresses can stay in the wardrobe. Urgent things - I have made an appointment for mum's blood tests next week (before the phone appointment with her neurologist in two weeks) so I need to either find the blood forms I picked up or phone to have more printed off to pick up when we get there. Will need to put a food order in sometime (look at available delivery slots later).

5) Just do 3 things.  Before you leave a room, look round and find 3 things you can do to improve it. It may be shutting a cupboard door, putting away something that has been left out, taking something with you that belongs in another room. It's manageable but it makes a difference. I also do this on days when I have to stay in bed. Some combination of illnesses and medications means I often have mild dizzy spells. From time to time I have lurching dizziness when I have to hold onto things just to get myself to the bathroom and back and not go anywhere the top of the stairs. It's easier if I just stay in bed until it passes but I can sit on the edge of the bed and pick something up before I move or put something away in a drawer. When I had to do a spell of bed rest, I would ask one of the boys to take out one of the drawers and put it next to me on the bed, so I could sit there sorting socks or toiletries, folding t-shirts or transferring notes from old notebooks.

6)   I believe that there is always an alternative way of doing things. I've 'mopped' a room by shuffling around with wet cloths under my feet, I once moved large tv upstairs (when they were the size of tanks) with the help of 4 small boys (roughly 5 - 10 years old). I put a sheet round it, gave them a corner each and they trotted up the stairs like reindeer, pulling whilst I did what I could from underneath and behind (and I didn't have to keep watching to make sure no-one's feet got trapped). I worked out all the places I could reach to clean in the bathroom whilst sitting on the toilet (not using) - most of the floor and skirtings (I wouldn't have been able to bend to wipe the skirtings), the sink, the near side of the bath, even the bars on the heated towel rail.  

I'll leave it there for now. I am known for epic posts but I don't want to bore you to tears. Will post more another day.