We all know, there is no money. But there are still laws and regulations in place that are supposed to cover their responsibilities, not just as Landlords where Local Authorities still have their own housing stock but to the general public too. It's all so complicated. In my own experience, they turn everything in to a battle. On 2 previous occasions, I've reached a point where in frustration I've emailed my local MP. At the time, I don't think I expected much. On both occasions however I was stunned by the results! I received emails/letters from my MP which roughly said "Although I am unable to instruct The Council, I am happy to write to the Chief Executive on your behalf to enquire whether there is anything that can be done to help you".
Not only did it work to my benefit, the speed was mind blowing! I am currently in the middle of another problem which is considerably more complicated and has been held up by Christmas & New Year holidays. My point is, I'm aware I'm not alone in this, and I would urge anyone reaching the end of their tether, might be worth checking with Citizens Advice Bureau on your legal rights. Then hassle your MP, and hold in mind we are just months away from General Election in May!! It's just plain wrong that the most vulnerable in Society of this 21st century civilisation should struggle so much to get the care we so desperately need.
Tulip xx
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I am so sorry to read that you are struggling to achieve what you are genuinely entitled to. These are truly difficult times for folk who are most in need, and for statutory bodies and NGO's alike due to cut backs and lack of funding in general. It is very sad that people have to write to their MP's or ring local media just to get their basic ''rights and needs met''.
I really think your post raises a lot of valid issues. However, can I please remind anyone who wishes to reply to this post of the FibroAction guidelines and please be careful on the subject of politics! As this is an interesting post.
I genuinely hope that you can get your issue sorted with them? And that it does not take forever?
Thank you Ken. I felt this was an important info post for people in similar situation, and I tried very hard to avoid making it about politics. From administration point of view, I hope I succeeded?
My problem currently under review has been going on since April 2014, but is more complicated than previous issues. I'm not complaining, i'm very much convinced it's a 'one off' the Council have not encountered before, and they have tried every which way to help. I'm a Council tenant. The ancient and inadequate Economy 7 heating needs to be replaced. I have an oxygen concentrator, which as you will know means I cannot stay here whilst work is carried out. Until 8th December when my lovely Community Matron left, she was trying to help the Council find me suitable accommodation for my disability needs. The installation had finally been booked in for 15th December, but had to be cancelled. The Matron who left is not being replaced for the time being, and as the whole community services here is already in crisis she explained there is no one available to pass this on to. This matter was not actually something she would ordinarily be involved in. She just wanted to help.
The only room in my bungalow with adequate heating in very cold weather is my bedroom. This means of course, my World is really shrinking even more to the same '4 walls' quite literally! The cold penetrates deep into my bones and pain is intolerable! Under the circumstances I feel i'm coping well. However, my MP will return to his office to find a case he thought was closed, isn't. Tulip
Mine is pretty quick to respond. I get an email back the same day, copy of his letter to Chief Exective with my email in a couple of days. I'm happy with him, sadly some of them don't seem to be so lucky. Tulip xx
MP is your elected representative and the party they are assigned to should make no difference to how they help you with matters that are affecting you in their constituency.
In the days before email if an MP received a letter they calculated that 300,000 people thought the same?
Had some success in tackling issues by talking with my local councillor the detail seemed more important for them than the MP's office that looked at a much bigger picture.
They work for you so use the representation if needs be is my view.
agreed. i'm housebound, started with the local councillor who was unwilling to visit me. don't know why. I have over the years discovered, if I found myself bogged down in red tape the answer was to 'go up the ranks'. I suspect there are front line staff unwilling to help for whatever reason, but far more who didn't know how to.
My local councillor has a profile on facebook, twitter and uses e mail rather than phone calls or ward surgerys because of cancer treatment that is limiting activity.
Getting the attention of those at the top requires a voice that can shout louder than the other competing interests which is easier with a group of like minded individuals forming an angry mob has gained attention from those with power throughout history.
Believe it or not, I did not think of Facebook etc! I love the internet, although my tech skills are not great, my housebound life would be much worse without it. I do my banking, shopping, browse for info. (that's how I found this site) but I have never really got into social networking.
I contacted my local councillors when I had my initial problem which as you know is still ongoing one of them got in touch very quick and tried to help but only got so far. So maybe I should go higher in the chain. How do I find out who my local MP is as you say with an election they will want to help. I have never used them before so it's all new to me but desperate times lead to desperate measures. As I can't take much more of what is going on.
Google 'local MP finder'.. In my case I emailed, giving my situation including details of health, practical difficulties, asked him for advice. I'm not sure when they're back from Christmas break, but I find they're pretty quick off the mark. You cant go on as you are. Something needs to give. Good luck, Tulip xx
Or google 'find local MP'. I'm inclined to make some things more complex than they are. I benefit a heck of a lot from the internet. My tech skills however are not great! Thanks for your input. Tulip
Putting a post code into the box the link opens keeps things quite simple but if you need tech skills someone between the age of 5 & 10 it's what they have grown up with so they understand more than we do
I just wanted to add, MPs go straight to the Chief Executive, to bring your case to his attention, he will include your email and covering letter asking if something can be done, sending you a copy too. I have since heard that when the Town Hall receive mail from Central Government they do sit up and take notice. Give it a go Jackie. It's wrong to treat people like this. Tulip xx
I have sent an email to my local MP explaining my situation. I cant see it hurting after all getting no help anywhere else so worth a try. The people above now have a child which i believe could be staying overnight and has spent the last four hours bouncing off of my ceiling so if he or she is here over night then it could be another very long night. I really really hope not I have had permanent chest pains for a few days now and i know its stress and i cant seem to relax at all. I went out with my daughter for an hour today which was good but i knew i had to come back here. Added stress is that it seems son number two has split up with his finance and i find out from Facebook i have texted him as support but no reply as yet if i phone i know he won't answer as he never does his phone always goes to voicemail. Then my daughter who also has fibro well actually 3 out of 4 of my children have fibro. Her finance said a week ago that he wasn't sure he wanted to get married they had booked the ceremony for the 29th May but he hasn't given her any reasons why or what is going on so we are both completely stumped by the whole thing and of course i am now worrying myself silly over her as she doesn't deserve this and he has always seemed to love her so much. But everything is now so upside down for her as she doesn't know whether he wants her or not. Why is it it never rains but it pours. All i can do is be there for them at the end of the day. But when its hard to be there for yourself its hard to be there for others. Thank you for your ongoing help it is so much appreciated if there is ever anything you need feel free to let me know. xx
I'm glad you've emailed your MP. Hopefully the 1st step towards sorting out the noise situation. Perhaps next week you can look at the useless GP problem? Since moving here, the difference it makes finding a caring GP, cant describe.
I'm sorry the family are having so many problems too. Perhaps your daughter's fiancé just needs some head space, pre-wedding nerves?
That wont help your daughter right now of course, but I do hope it works out for them. I have heard propensity for FM can run in families. There is no doubt in my mind that both my girls share some similarities in common with me. I dare not tell them that though. If they bring it up, I'll explain more. Your son sounds like the independent type. Perhaps he doesn't want to worry you, or he likes his privacy perhaps. I find it hard at times to back off, we don't ever stop being mums do we? My happiest times with my girls were when they were small. Daughter number 1 was known as sweetie pie, number 2 known as cheeky monkey. Now in their twenties, they seem to have transposed personalities!
Just wanted to say, the chest pains that come when you are more stressed, have you mentioned it to a GP? Whether you have or not I think it would be a good idea to take that as a good reason to see a different GP asap? I think these things always need checking on. I really hope that the child upstairs either goes to sleep or goes home! I wish you all the best. Tulip xx
I can honestly say i think my happiest times were when the children were probably teenagers the house was always full with their friends who stayed over frequently and all called me mum as my ex was always working away it was always such a funtime when he came home at weekends he didn't like anyone round ever but i always looked at it if they were at home with there friends they weren't getting into trouble anywhere so it was a win win. They never gave me a days worry as regards trouble with the police or anything untoward such as drugs etc. I think i felt loved and needed as well. My son likes to be the martyre unfortunately but i'm sure he will deal with it in a way i am pleased about his relationship as i felt she was too young for him and she chose to go to university in Carlisle and didn't want him up there with her which is why he moved to Leicester as it would mean it wasn't too far to travel to see her. There are other GPs at my surgery that i haven't tried yet so just need to see them. Take care Jackie xxx
I opened my door to their friends too, especially when they got to their teens. I did it because I was more worried about their safety than anything else. Every Friday night the house would fill up and stay that way 'til Sunday night, back to school again Monday! I loved all the girls, some would stay for weeks at a time, not just at summer holidays but if they fell out with their own mothers they just moved in! I know their families knew where they were, but sometimes the constant noise wiped me out, and when money was tight and despite heavy hinting on my part, it was taken for granted that everyone would get fed. Which of course they did, somehow. I remember toast and egg sarnies would often keep them happy I'm not complaining, there is a lot of love in this family and that is what matters the most. We all need to be loved don't we, whatever the age.
Good luck at the GP. Let me know how you get on? G'night, I hope you get some much needed sleep. Tulip xx
It sounds so much like my house back when they were teens my sons first girlfriend even lived with us for a while because the place she was living in had a landlord who let himself into her room whenever he wanted to and i wasn't standing for that even though my son split up with her she still calls mummy no:2and we are still in touch and her brother at the time was only about 8 and when i posts something the other week he sent me a private message he must be about 18 now possibly a little older and i never expected a message from him and it was just so sweet. We used to take him swimming with us at the gym he was a lovely cute little boy and now he's a man how time flies. I did an Access course about 5 or 6 years ago and one of my sons friends was on it he was also a best friend of one of the girls who called me mum and who i still have contact with but he passed away a couple of weeks ago of cancer at 26 he was diagnosed in his first year at uni but it took them too long to diagnose as it was bone cancer he was fobbed off so many times being told it was just joint pain or he'd pulled a muscle and by the time they found out it wasn't i think it had spread so he battled as long as he could.
I hope you have a lovely weekend my daughter is popping over so i will have company for a couple of hours. Didn't sleep much but nothing unusual there i think i nodded off around 5 this morning but feel so tired and in agony this morning. My knees always get so bad at night and my hips anti means i can never get comfortable and if i sleep with my right knee bent (the replacement one) it seizes up completely.
Best of luck Tulips I hope you get a speedy resolution to your problem. You are right your MP can help you when others are not and very quickly. My Mum went to her MP as she was so worried about me and I received a phone call from the council less than a week later. Now my problem is not solved as such yet however it's much further forward than it would have been had it not been for my resourceful Mum. It's wrong we have to shout & stamp our feet to be noticed yet sometimes necessary to maintain as much sanity as possible.
Hi Tulips, I am very very tired didn't go off until 5 again this morning then ended up sleeping in until 11.45 so not i'm cross with myself because it impacts sleep tonight now but i guess my body just needed it. I have the hand consultant clinic on wednesday this week and am trying another GP at my surgery on Friday see how i get on with this one. I'm in a lot of pain in my back and feel like i have beaten with a baseball bat so nothing new there. I got a new bed last year as my old one had started to say and i thought that was what was needed but i am in as much pain with this one as i was with the other. But it may be where i'm tense and the not sleeping.
Worrying about my son and daughter hoping things sort themselves out for my daughter although she is already hurt and now unsure about things herself because her self esteem is not the highest at the best of times so not its rock bottom again and i know i'm her mum but she is a 6ft blonde slim beautiful young lady but getting her to believe that is another thing. She doesn't see guys falling over themselves looking at her she is totally oblivious. I have tried contacting my son as he has put no one gives a f... on Facebook well how can we help if he doesn't tell us whats going on. I have to find out him and his fiancee have split up on Facebook.
How are you? I hope you are ok I am going to have a go at cross stitch today which is normally my saviour but depends whether my hands will let me.
To be honest, I think you're at the stage where any opportunity to shut your eyes, give your body and brain a chance to repair a little, you should take it. Hopefully, once you get some decent pain relief you will be able to sleep better at the right time. You cant stop worrying about 'The Kids', it goes with job description no matter how old they get. Problem is you know stress affects your pain levels. I can relate on that one! Daughter no. 1 - petite blue eyed blond and pretty - zero self confidence. Daughter no. 2 -Tall brunette often described as stunning and since the age of 14 has quite often been stopped in the street and asked to take photo portfolio for modelling agency - thinks people are having a joke, zero confidence. I do not know what they see when they look in the mirror! I hope your daughter finds answers, even if it means cancelling the wedding (I hope not). As an outsider, it sounds as if your son has an independent spirit and has no intention of sharing his problems with his caring mum! Doesn't help you much I know.
Good luck at the hand clinic, and do let me know how you get on with the new GP. Daughter no.1 has just arrived. I'm good thank you, will message you later or in the morning. Take care Jackie. Tulip xx
Thats what i don't understand re my daughter she took some beautiful pictures of herself yesterday and put them on Facebook then wrote she was sick of her face and needs plastic surgery i self esteem is zero. She went to a modelling agency and had some absolutely beautiful photos took all in one take they said she was stunning and a natural now hearing it from me ok i am biased but from an agency surely that should give you some sort of confidence. Trouble is blokes have cheated on her this hasn't helped, now her fiance who has always been so steady and so in love with her has dropped this bombshell and she doesn't have a clue still what its about. The wedding is off for now so is all being cancelled so i am not sure whether they will last or not it has hit her hard i know i can tell its making her want to bolt so all i can do is be here for her.
I think you are right my eyes feel very sore and i am so tired but when i get to bed don't sleep will mention chest pains on Friday as still getting them but i really think it is stress because i really cant relax at all. Feeling very weepy at the moment but not sure why again could be tiredness again. I hope you have had a nice time with your daughter. Take care
Hi Jackie, From what you have said, I think your stress levels are horrendous and as a result your FM symptoms, including the pain, noise, dry & gritty eyes and heaven only knows what else, & as tired as you are it is almost impossible to sleep properly. The chest pains could also be muscular which again is possibly FM, but I would still make sure you tell the GP, perhaps write a list before you go and hand it over when you walk in! I never remember everything. Just had a thought. I have found that the Optrex spray, you shut your eyes and spray, has helped me with sore and gritty eyes in the past. Might be worth talking to the Pharmacist 1st though.
So sorry your daughter's wedding is cancelled for now. You are right though, sadly all you can do is offer the shoulder to cry on. I'm sure that she will be ok, but it will take a while to get back on her feet, learn to feel comfortable in her own skin. It took me about 40 years to work it out. I lost my hair when I was 12. It took a heck of a long time to adjust/accept, but I got there. 1st marriage was a top level disaster, 2nd was my soul mate and I learned a lot from him. He died in 2010 but is always in my heart. Life is tough, horrible to see our kids in pain. But as much as I would like to shield my girls. I cant.
They have to work it out for themselves. I have 2 shoulders, as long as they're gentle they know i'm here for them. 'chat' soon. Tulip xx
My daughter texted me earlier to say she was going to focus on herself as she said she is only 22 so has lots of time and she would like to try and look for a career path. She was going to train to be a nurse she was accepted into Bournemouth uni but didn't do it for two reasons one because she felt she couldn't afford it as she had just moved in with her fiancé which in that case I wish she had stayed with me as that would have helped me there wouldn't have been pressure to pay rent at his place but she could have stayed over when she wanted. Her other reason was she didn't want to end up like me get so far in her training and have to give up because of health reasons. She telephoned PIP today to be told they had only received her report on the 30th December even though her assessment was on the 9th December why it should take so long in this day and age to send a report sure,y they should just be able to email it to them. They then said she could have to wait another 4-8 weeks which I think seems a little bit of an exaggeration I said hopefully she should hear. By the end of next week. She has seen other people who had assessments mid December have already heard. So after waiting 32 weeks for the assessment followed by so far another 5 weeks that's a very long wait. I really hope she gets it after all this time she has all the paperwork etc so should be ok. But she is thinking of going back to work as she is so bored at home and needs something to focus on. I told her to try it for over 26 years I would love to go to work but I know my body and it just wouldn't work. When I said to last gp about pain in my back and hips if I sit at my friends for a couple of hours trying to make cards or scrap booking (she has to do all the cutting out and punching things out as I can't do it) I am in so much pain so she just said well don't sit so long get up and move around as some of us Drs have to do we all have pain at some time but we adapt to it. What does this woman think I've been doing for 26+ years I deal with it I manage it but at this point it is unmanageable I think if this Dr is no good on Friday I will look at other surgeries. I also had an email from the MP's secretary or whoever does there letters saying thank you for my email and that he would give a full response shortly. They probably have a lot to do after the Christmas break but at least I know it's been received so will see. Hope you sleep well I am a bit tired but not sure I will sleep fingers crossed.
It sounds like she has sorted a few things inside her head. I know she has FM, but I think she could be right to try something, give herself a new focus after the shock of the last few days. Bless her, you have to admire her spirit! Have you been caught up in the 'bedroom tax? Assuming she is successful with her PIP claim the money should at least be back dated. Doesn't help her now of course!
That GP sounds another right charmer. Just had another thought (I know lol, 2 in 1 day!) This Website has a list somewhere that has names of good GPs and Doctors, consultants even, recommended by members, with special interest in FM or at least a sympathetic interest. If I were you, could be worth asking someone from Admin. Ken, aka The Author, seems to be a bit of a night owl and he is so kindhearted, It is very late and I hope you're snoring gently in the land of nod. That's me off now. Do take care. Tulip xx
That was the lady DR i saw last time that had said that. Which is why i have looked at all the drs at the practice and picked another one and this is the last chance when i go on Friday.
Surprise surprise i didn't sleep until early hours again and to top it off my left elbow is absolute agony i don't know whether its linked to the surgery i had on the hand but it all seems to be stemming from that so not only does the hand hurt my little finger has a mind of its own but now the elbow as well. I just hope i'm not fobbed off again tomorrow at the hospital because i really need this sorted as it is preventing me doing my cross stitch which is the only thing i can really lose myself in and i need it. I have done little bits at a time but thats it nothing like i used to be able to do. Yes my daughter seems to have sorted some things out in her head which i am glad about but i think its her trying to protect herself more than anything as she is so afraid of being hurt so she is building a wall up. I hope she comes up with something that she can do. I haven't been affected by bedroom tax as they only allowed me a one bed flat. Previously when i was renting privately i was allowed only money for 1 bedroom even though i had two and the rent was £750 i received £400 so had to make up the rest myself. I have to say this was before bedroom tax so when it was introduced i felt it was fair as in that i could only have money for 1 bed even though i was paying an awful lot more than people in a council house whose rent is probably half that or a little more for 2/3 bedrooms it never seemed fair that if you were being penalised in a private rental why should you not have the same in a council place which is cheaper in the first place. I know its a very controversial issue. I sometimes i could go back to private as at least then i could pick where i live and be happy but to do that you have to have around £2000 of referencing deposit and a months rent. But hopefully will hear from social worker team etc sometime this week.
Have a good day. I am going to have a go at a bit of stitching and prop my elbow comfortably so I'm not moving it too much. Even if they give me a steroid injection or two tomorrow to try and help the pain in hand and elbow.
Good luck tomorrow with your hand. I've had the steroid injections, but for me they only work for 10 &14 days so they wont do them anymore. I gather the majority of people tend to have more success than this!
I seem to be entering another 'phase' in the FM, which is the 'sleep 20 hours out of 24' phase. This illness does nothing in half measures does it? Please let me know how things go tomorrow. Hopefully they can give you at least enough relief for you to enjoy your cross stitch. That elbow sounds very much like mine, hot and extremely tender? and i'm not sure whether that is rheumatoid arthritis, FM or gout-type arthritis. Make sure you tell them everything that's going on. They really need to know. If you still get nowhere after all this, you def. need a new doctor!
The appointment tomorrow is with hand consultants team so will mention elbow as well as I now an struggling to move it but I think it may be where I was trying to get my hand to lie flat as it should be able to do but got up this morning and it hurt and tonight to move it is agony. The whole wrist hurts as well as my little finger not wanting to straighten this is nothing like the recovery of the right hand after surgery the only thing they did different was inject the little finger and two fingers next to it as consultant said finger surgery as well as the thumb would be too much so I am wondering whether something was showing on my X-rays for the fingers. This is why I want to see rheumatologist to have blood tests etc to see what is going on I know I have osteoarthritis in my hips and knees and thumbs. There is a history of gout and arthritis in the family. When I see GP on Friday after finding out tomorrow whether it's too early to tell with hand yet. But will ask again to be referred or even have blood checked haven't had any tests at all in years. Will let you know how it goes.
Hoping to get some sleep tonight
Again
Take care I wouldn't mind your bit of fibro to catch up with sleep for a few days I know I shouldn't wish that but as my body is just not relaxed and obviously causing more problems because of that.
Went to my hospital appointment they are going to do an MRI on the hand and thumb also elbow along with ultrasound on the elbow to see if there is anything going on that they cant see on the X-rays of my hand. Once i have had those done then i will get an appointment back with the consultant. Was told i may need a steroid injection in the elbow as it sounds like its inflamed so another joint to add to the collection of all the steroid injections I've had over the years from my toes to my shoulders lol. I used to have to have them frequently in my big toes and then they actually worked and cleared up fully one joint that i haven't had to have surgery on. whoops hope i haven't jinxed that now. I took some amytryptiline last night i know I'm supposed to be off it but to be honest the trazadone they have put me on does absolutely nothing at all i may as well have sugar lumps. I am definitely having a massive flare up though all over i lay in bed crying with the pain last night because no matter what i did i couldn't get rid of it. I tried a bath which i don't do often because of not having any handrails etc and worrying about slipping or the knee giving way. I do take my mobile and house phone in there just in case as both my daughter and my best friend have a key for emergencies.
Just looking at my debts now as i really need to sort those out because i am sitting here frozen because i cant afford the heating on all day i just put it on if i have visitors.
Hope you are keeping warm and having a peaceful day.
sounds really positive, heaven only knows you deserve it! I think it's about time your pain relief meds were revised too. Obviously I don't know your personal circumstances but I wonder whether you would qualify for social services to assess with a view to replacing your bath with a walk-in shower. From what you've said, it's not safe using your bath the way it is. Could be you just need grab rails. Worth asking anyway. Also, might be worth talking to Citizens Advice Bureau? Money is tight for most of us, if you qualify for more in the way of disability benefits that could help. You've put up with a heck of a lot. Respect!
I had an awful night actually. I fell on my way to the loo. My bladder is more demanding than my legs can carry, lol, most of my falls are during the night. Somehow, no bones broken thankfully, but I feel like I've been run over by a double decker bus! You can relate I know. My riser recliner chair has broken, so now i'm pretty much confined to my (lovely) bedroom. Frustrating! My carer came this morning (I need help in the shower), but I couldn't get out of bed. I have to move myself or I know I'll seize up, but it took me a while to get moving.
I was contacted by a social worker last week so still waiting for her to get back to me which she assured me she would if I don't hear this week I will phone on Monday as I know they have only just come back after Christmas but after watching a programmed about benefits too fat to work. The bit that really wound me up was a gentleman who was so fat he couldn't get in the shower his partner who became his wife during the programme hadn't worked in 20 years but it wasn't said what her health condition was she was overweight but was able to walk and they receive £2000 a month in benefits and he has carers in paid for by the council to wash him twice a day I think. Why can't his wife partner do this. What annoys me I have hardly had a bath or been able to wash properly for weeks/months as only having one hand to use which isn't even great because my fingers are locking I couldn't get dressed unless my daughter came round couldn't put my bra on etc. I contacted Care direct to come out and assess my place for rails and things because I knew when I was having the surgery when I was renting privately they were out within a two weeks but were limited to what they could install with it being private but being council and they work for the council or there offices are in the town hall I get a letter saying they are too busy which is why I fell off the toilet after my surgery and broke the arm Ihave no rails in the bathroom those were and are my main concerns. But I can't get the help it just seems so ridiculous. I have just had to go out my back door in the pitch black dark to close a metal gate that someone had left open and with the wind it was clanging back and forth as its attached to my bedroom wall it keeps you awake. Just because someone taking a shortcut to the alley at the back couldn't be bothered to shut it properly. I am terrified going out there as I can't see where I'm going the first time I had to do it I nearly fell on my own doorstep. Then you don't know who is out there and with the alleyway as well. But if I don't do it then it's another thing to contend with at night. I am going to speak to this GP on Friday and I am hoping he will listen and either refer me to the proper pain clinic or to a rheumatologist or even do blood tests which will show inflammation or if I am lacking anything and it can show arthritis. I really think I have rheumatoid in my hands but as no one will listen or do anything I can't find out at least if I know I can look at things to help. I filled a form in with step change a debt charity thinking they would go for a DRO as I worked everything out and had more going out but the way they worked it was completely different and they had split money up In different ways that would actually ,A&E me a lot worse off. They had reduced money I owe income support which is being deducted at £17.75 a week from my benefit I phoned the to ask how much I still owed the and the first thing the guy said was you cannot lower the payment if that's what you are thinking because of new legislation,I had said to him I was sitting freezing as I couldn't afford my heating on but I didn't want it lowered as I want to clear it as quick as possible it was overpayment I had so I want to pay it back. It will be finished this time next year which doesn't seem too bad. I'm sorry you fell last night yes I know how you feel the next day like you've been hit by a bus. So take it slowly for a few days and be gentle on yourself. I wish I still had a recliner seat I have two settees but after a while my knees hurt if I have them down then the base of my spine is painful. If I was a dog I think they would put me down lol. I do get my light near the front door tomorrow so at least I don't have to worry about either me not seeing the top step or anyone else and I will be able to see the keyhole to the front door if I'm out in the dark not that I am out late but it gets dark early at the moment and like my Drs appointment on Friday is 4.30 it will be dark when I get back.
I hope you aren't aching too much and you get a goods night sleep. Chat tomorrow sweet dreams Jackie xx
Dear Jackie, I feel for you so much, I was in your shoes (or very similar) until I moved, new surgery etc. I watched that programme too. If I hear another person say "why shouldn't I?" I will scream! These people are unable to grasp the concept that hard working, struggling are paying for it that's why! I'm forced to live this way, it is most def. not a lifestyle choice. The boredom drives me crazy some days. I'm in a lot of pain again, due to the fall I know that. It will improve. My daughter and her 2 year old are coming tomorrow, they will cheer me up. I wish I could get on the floor, play with him. He is so sweet. I've got some sticker books, he loves stickers so at least I can play a little. I always keep things for the boys. 2 year old is happy with anything that has wheels or stickers, combine them and he's as good as gold! Keep me posted, how you're doing etc? I hope you get some rest tonight. The apptment you had seems quite positive, not a day too soon, and hopefully GP on Friday will work out better. They really must do something to give you better pain relief! Tulip xx
Thanks Tulip, I am sorry you are still in pain but i agree it is probably because of the fall our bodies don't like being jarred in any way at all and it inflames everything. This is the discussion i had with my daughter yesterday when she said she is not going to let fibro control her she is going to take control of it which as she is only 22 is a good thing so she is looking for a job the trouble is not sure how long she will be able to do it before it flares up again and she has just been awarded ESA which she will lose but then she is giving it a go which is more than can be said for those people on that programme. I said to my daughter i would love to be able to go out to work and meet people but because this illness has affected so many parts of my body i just couldn't do it. i would love to go back to nursing but i have to be realistic. But it does make you feel so useless sometimes my daughter has been home for about 5 months and says all she sees is me and its so boring at home so i said tell me about it but apparently its different for me (not sure why) maybe because she sees me as being old!!! The psychiatrist wanted to take me off of amytryptiline and put me on trazadone but to be honest i am not surebwhat the trazadone is supposed to be doing but whatever it is its not working it doesn't help me sleep or relax i'm still not on a high enough dose for it to be an anti depressant but the last dr i saw said the shrink wanted me on 150mg which is what i am not on. So I don't know there has to be something to help me relax a bit but then do i want to rely on a pill to do that i would be better off with housing and living conditions sorted. They were up at 6 this morning again and i know she has to get ready to work to be walking round and round the bedroom for an hour why not get your clothes ready the night before and put them in the bathroom or the lounge my ex used to do that when he had to be up early. I suppose i am just being selfish they have to be allowed to live as they want as they are paying good rent for the place. In fact they are paying twice what i do as its private.
I was hoping my daughter would be starting a family this year as that was one of the plans but now they have called the wedding off for a while its not happening. I would just like to be able to play with them when any of them do have children but as things are going with my health i won't be able to short of a miracle happening.
Hope you have a good day today take it easy until your body aches less.
I don't think you're being selfish to need some peace and quiet. On the other hand they probably have no idea of the suffering going on beneath them. Not sure whether I would have the courage to tell them either! Re. the anti-depressives, I think
sometimes they start on a lower dose and increase slowly in case you have a reaction, or severe side effects, or find you don't need a high dose to be effective. About time your meds were sorted. Friday tomorrow, I really do hope it goes well with the new GP!
I'm glad your daughter is coping so well. Must be a relief for you. I don't feel old as such either (I've just turned 53), but sometimes it feels like my girls talk to me as if i'm a bit senile. Maybe I am lol. It doesn't bother me. They tend to laugh which is better than taking things too seriously, I have more than enough to tackle depression as it is! Good days, bad days, tough at times to find a balance. Daughter came up with 2 year old grandson, we had a lovely time. I do recommend grandchildren for mood enhancing! Aching like mad of course, like you said it's prolonging the after effects from the fall. I'm now pretty shattered and going to settle into bed. I have SkyGo, so I can watch tv in my bedroom. I will be thinking about you tomorrow, feel free to let me know how it goes at the surgery. Take care Tulip xx
Hi Tulip i am so glad you had fun with your grandson. I am just a few months younger than you as i will be 53 in May. My daughter talks to me like im senile at times telling me i have told her things already she has been a little better recently as she was snapping at me a lot. She upset me yesterday but thats not hard to do at the moment and she didnt want to upset me. The people above know that i can hear everything down here as just after they moved in he came and told me to relax that there was nothing they could do about it. But some things they can control things like when his partner is getting up for work at 6 get clothes ready yhe night before because the alarm wakes me then her going round and round the bedroom and it literalky goes on for an hour. He knows i can hear everything in the bedroom as i told him so. He said about a fan he had on which i hadnt worked out where the noise was coming from all this is with ear plugs in. I am trying to relax but its tough. Had an outside light fitted today so thats something i guess. Also had a phone call from a guy saying he is an old social worker and i am seeing him next Thirsday however he said he couldnt make any promises on anything so i said i gave up on promises been let down too many times. Re my meds i believe the shrink had written for the trazadone to just got to 150mg a friend of mine who is on them says that is not an anti depressant dose so not sure they will increase them anymore even though they are doing nothing. I have virgin in both my lounge and bedroom so if i feel uncomfortable or not too good i can go in the bedroom to watch things. I hope you get some rest and feel a bit better tomorrow. Take care
Dear Jackie, sorry I've been sleeping most of today. just up, shower, clean clothes (night sweats, pretty awful at this age). I don't know what time your apptment was, I really hope you're getting somewhere.
People can be so selfish. A little thought and consideration doesn't cost anything. You cant manage anything 'til pain levels become more manageable, decent sleep, manageable depression. I think everything else needs to be put on hold Please let me know re. apptment today. Tulip xx
Hi Tulip, I may have come out of the surgery waiting room with more than i went in with. I must remember in future not to make my appointment at 4.30 as thats when all the germs come in. I don't know whether it went well or not. He hadn't seen me before and he said in a nice way that its better to see the same dr so they get to know you so i said to be honest i hadn't got on with the last two especially the last one when i saw her. I said i had chest pains but he put that down to stress which is what i think it is any way as i know i am under so much stress with those above me and the area. He then asked when the mental health team were seeing me and i said i hadn't a clue but i may know more on Thursday when i see the social worker. So he then started looking at my meds but went on to say i am already on a fair amount of sedatives and they have to be careful that they don't overdose me (michael jackson came into the conversation somewhere) he said that if you build up a resistance to the sedatives then they have to be upped and upped and then one day they can just kick in and you can easily overdose on them. I told him i don't care i just want to sleep and not wake up. I need to sleep. I said i had been in tears the last two nights with the pain in my knees and hips why does no one listen to you. So end result he has upped my trazadone so will see what happens. I can understand what he is saying because i know tablets aren't the answer then he said about alternative medicine well I've done all that as well went to a special clinic years ago in southampton and had acupuncture among other things. I know i need the housing etc sorted then i can sort out the other things. I will give this guy a chance and try and see him for a few times as necessary and see how it goes he seemed to listen. Although i feel he should have checked blood pressure etc but i am assuming chest pains is stress the odd thing is the first dr i saw there who was only a locus took my BP and it was 90/70 so I'm surprised that has never been checked again to see if it was a normal rate. When i had an ECG before my surgery they weren't happy with the first 2 times they did it so had me lying down sitting up etc then it was ok on the third go but told me to get checked at Drs.
I am glad you managed to get some sleep I actually went out today with my daughter we went to see Into The Woods a Disney film of Stephen Sondheims musical I love my musicals and i ended up crying at the end i don't think there s a show yet written by him that i don't cry at except for sweeney Todd as thats not a sad show. We also had lunch out so i actually ate something. I used to be able to eat a whole tub of Ben and Jerrys or Haagen Daaz ice cream at night at home now i cant even face it i tried some and it made me feel so sick. No wonder the weight has dropped off. So it does have some benefits. I could still easily lose another stone i think and be in my BMI range at least i'm not just over it now. I am trying to think positive. I was talking to a lady in the chemists and she was asking what my problems were as she saw my hand in the splint and my stick so i told her she was a really nice lady. I felt cold all day and said to my daughter i thought i was coming down with something then realised i hadn't taken my MST this morning so it was the withdrawals of missing my dose kicking in. So i took some oromorph as i will be taking the most tonight and didn't want to take them to close together.
I hope you have had a good day and not too much pain.
Hi Jackie, My eldest daughter is big on Disney/musicals, she would love to come with you, especially with Ice-cream/popcorn!
I get the impression your apptment was ok. When I was in the mental health system I found it hard going trying to find a GP to take me seriously, look into physical illness. It was too easy for them to put everything down to mental health, when in fact mental health issues often do go hand in hand with physical illness. From what you say, this GP def. has potential! I really hope so, you've had more than your fair share of troubles!
Good for you though, getting out, treat yourself for a change. I'm struggling somewhat with pain. I know I have to ride it out. I have upped Oramorph a little. My GP said It's ok in the short term, no more than 3 days in a row. I'm not keen on withdrawals either!
I think you're doing really well under the circumstances. This sleep, or lack of, is a big problem. I hate it more than anything. I do hope your Social Worker can help. 'Chat' soon. xx
Hi Tulip, I had tried to cancel the Drs appointment when I wasout because I knew it meant me coming home then going out again and the thought of going as well really had me on edge. I will give him a chance will obviously know a bit more when I have seen social worker as the Dr asked me what the mental health team were doing and I said nothing so he asked if I had phoned them. Should I really have to phone them shouldn't they be sorting things the shrink referred me to someone back in October/nov and I have heard nothing I said I had phoned them on Boxing Day. Which he knew as it shows on the computer. I just daren't build my hopes up on anything but I know this stress will kill me one way or another if it doesn't let up.
My daughter got her PIP letter today to say she has got it so she is very thrilled about it now after waiting since last April.
I am with you right now on the pain scale I would gladly chop off my legs from the waist down because my hips and knees are driving me mad today it's from sitting in the cinema but it's been the same last two nights I've cried with it. I have taken two lots of oromorph today to try and hit it on the head. But Drs don't care about any of that they can only focus on one thing at a time and I get to the stage where I feel I am wasting there time by keeping going to see them over and over when other people need the appointments more than me.
Depends whether your daughter likes Stephen Sondheims music asi think his writing of songs is like marmite you love it or hate it. But I have seen lots of his musicals and love them even though most of them are quite moving. Saw Michael Ball in passion many years ago it was absolutely brilliant and I literally sobbed it was about real love looking beyond how a person looks physically. Plus Michael ball was slimmer than and was naked or he may have had some sort of underwear but my jaw nearly hit the floor as it was the opening scene I sat there nudging my friend lol.
Dear Jackie, I feel for you so much! You must feel like you're banging your head against a brick wall. Feeling like that, but you stuck with it and you saw this GP. I know he didn't do everything you wanted, as you said they often only deal with one problem at a time, especially when mental health is involved. Someone told me a few years ago that whilst in training GPs only do 6 week rotation on mental health, and I've found in the past many of them they run scared! I sense this one does have potential. I agree, the Social Worker should be sorting out your housing. Keeping you waiting like this is cruel. You are ill, and you have the right to be cared for. You are not wasting anyones time. Until you experience it, it's impossible to understand how it feels to have to live with this level of pain, and on top of that sleep deprivation and everything else that goes with FM! We know there is no cure, but the least we can expect is every effort possible to help relieve the symptoms. Meds, suitable housing etc. You have these rights! One thing that annoys me about these documentaries, people should be prosecuted for robbing hard working taxpayers, but we're all getting tarred with the same brush! The welfare state is in place for genuine, sick people, and i'm sure most taxpayers would agree, bearing in mind any 1 of them could wake up one day to find themselves in the same shoes!
Keep the good work, I sense there might just be a faint dot of light at the end of the tunnel, and it's not a moment too soon. Keep in touch Jackie, we have a lot in common, which I think is helpful to us both.
It's me again lol! I very much hope you're fast asleep. I'm struggling, still in pain, cant take anymore oramorph now. think it's going to be a long, long night. I was thinking about what you said re. Disney movie and love, looking on the inside, not how people look physically. I lost my hair when I was 12. Had so many issues, self esteem on the floor etc. as i'm sure you can imagine! My 2nd hubbie, well he was one in a zillion! He looked at me, the real me, on the inside. He helped me to come through and understand what real love is, and that I was worth it. Every day I picture him, looking into my eyes and saying "I love you SOO much...". I knew it was true, because I felt the same way. He died 2010, pretty awful. There were times I believed I couldn't do it. But I had to. After everything he taught me, it would be a terrible betrayal to his memory! I'm so glad now that I kept up the battle. I kept going and I won! Of course there are and always will be tough times. That's life. My darling daughters have been through some terrible, terrible times too. Life isn't a bed of roses for them either. I know they worry about me. I know they need me, emotionally if not physically. And now I have the utter joy of grandchildren! I feel you will be a lovely grandmother, one day when the time is right i'm sure your daughter has this gift to give you! This moment in time, stress about the wedding - on/off, job situation etc. and she's not well either. Even so, i'm sure the time will come. At last, I think I can go to sleep! Tulip zzz
Thanks Tulip it's 04.09 and I'm still awake the dog above keeps pacing it doesn't know where it wants to sleep then someone is snoring. My daughter thinks I'm paranoid as when I stay up a bit later they do tonight I tried it out as they were stamping on the lounge ceiling so I tried to come into the bedroom quietly after 5 minutes in here they were in there room they remain fairly quiet then start opening and closing drawers rummaging for stuff. I go to the bathroom one of them goes it's actually really weird. Anyway I was saying thank you for sharing your story it brought a tear to my eye as I wish I could find that I thought I had with the partner I had for 3 and a half years and I still love him but he didn't want me I accepted him as a deaf man and a kind of agoraphobic he could only drive within a 10 mile radius some parts in that 10 miles he couldn't do himself I would have to drive. I gave myself fully to him my kids accepted him and my family but his family never accepted me his mother was very nasty to me I found the letter she wrote me last year and still don't believe some of the things she wrote. What is it with mothers and sons. I have 4 but I would never ever interfere in their relationships they choose who they want to be with and that's it. I spoke to my son whose relationship ended on New Years she had been cheating on him and had left herself logged in on Facebook on his laptop he rarely goes on fab but he did so that night to say happy new year and there were the messages she had sent to her ex. So he is hurt but he will heal we had a good chat not too much about that as I didn't want to push it. I told him I loved him and I'm here for him if he needs me. I have watched a couple of the programmes this week where there is abuse of the welfare system and people getting help when what they have done is self inflicted and they have no inclination to do anything to change their lives. We don't choose to have this but can't get the same support that these people are getting I know some cannot help it as some have underlying illnesses that cause it but others have nothing wrong and are then enabled more by partners or parents. When I think of how I am battling to get just a bit of help and support and I am not getting it along with many other genuine people around. Well I guess that's the rant for the night over. I am going to try and sleep but not sure if I will or not. If I sleep now and don't wake up until mid day I will be cross with myself. Take care chat later hoping you are asleep.
Now I am cross with myself. Awake most of the night, woke up half hour ago! My daughter was here. putting a nice dinner together which is a nice surprise!
Just a quick hi for now, hope you're ok. Daughter said she has been here for a few hours now, bit rude to ignore her now i'm actually awake lol Tulip xx
Hi Tulip like you I was awake all night not one wink of sleep upstairs got me so wound up then I just couldn't relax at all. That's nice of your daughter at least yours seem much more helpful than mine I sometimes think mine just messages me for money as she did this morning. I know she will give it back on Monday when she gets her pip which has been backdated. I sometimes wish I could just pack my bags and just disappear for a while or just go somewhere where no one will disturb me. I am so very tired now I thought increasing the pills would at least give me one nights sleep. I haven't slept all day I did a bit of stitching so my hands now killing me but the stitching helped in a way for me to focus except for when someone was on the ceiling almost as if they are rocking back and forth on the squeakiest floorboard. I am starting to sound to feel as if maybe I am getting paranoid could I possibly be actually losing the plot. Every time I try to think ignore the noise etc it turns out to be louder. I am literally trying to switch it off. I hope you sleep tonight after sleeping a lot during the day we know it ends up being a viscious circle when we can't sleep at night so sleep during the day. I daren't sleep during the day and if I do sleep in in the morning I get cross with myself . Had a letter from the council today saying they had called round on the 23 rd of December to fix loose handrails and that they had put a card through the door asking me to phone nut he letter I had back then was about a stop cock which someone had also called round for on the Monday and I told him I had no problem with stop cocks. The other thing is there are no loose handrails as there are no handrails. The guy who came out to put the light up on Thursday didn't even know what he was supposed to be doing whether I had bought the light or whether they had to because it was a different guy that came out to assess the job on the Monday. I am beginning to wonder how this council actually runs because the left hand doesn't seem to know what the right is doing. It seems crazy. So when they come to fix loose handles they won't have handles with them.
I need to win the lottery I think then I can pick where I live if I had the money I would go back to private rental and struggle at least then I would be happier.
I hope you have had a lovely afternoon and a nice dinner. My daughter doesn't think of doing things for me. Unless I ask her which then she will help me change bed linen etc. other than that I am on my own.
My girls are pretty good most of the time. We all have our moments of course. I have top disability benefits which I use to pay for a carer. I need help in the shower and getting dressed. I'm not comfortable to have my girls getting quite that personal. Carer also does a pretty good job of keeping my home clean and tidy, which I appreciate very much. In an emergency my girls will step in to change my bed and hoover, and I do my best for myself on personal hygiene - I have a walk in shower, which I love.
My local Council is pretty bizarre. Don't know how they do it, I think about 90%-95% of the time they send plumbers when I need electricians and vice versa, and then they get stroppy with me! Law of averages, a wild guess would get it right more than that!
Sleep deprivation is a recognised form of torture. I'm in bits after a couple of nights. Do you have the name of your Social Worker? You cant keep this up. Huge respect you haven't gone completely insane, but enough is enough. If you don't know who it is would you be able to ask GP surgery, or ask GP to call you back at the end of surgery? You're not well enough to keep trotting down there which you should stress to the receptionist. My surgery has that as general practice rather than visiting patients at home unless absolutely necessary.
Goodnight Jackie, nice to 'talk' with you. Tulip xx
Hi Tulip, I thought asi hadn't slept the night before I would go off early last night but no it wasn't happening drifted off late in the night then slept until 10 but didn't want to get out of bed as it was cold my eyes are just getting sober and sorer. My daughter is getting higher rate on both but she wants to go to work as she is so bored at home I said she should be careful as she has only just received the benefit and I know she is trying to fight the pain I even tried to tell her to just go part time but she won't have it I know she won't be able to do it. I think most of this stems from where her fiancé has said he wasn't sure how things were going and the postponing of the wedding. I think she needs to meet people the irony of it is she doesn't understand my part of that and how I missseeing and chatting to people. But at the moment with everything going on I am as you know struggling. She is thinking of getting me a little dog for company. But I think I would like to find somewhere else to live first that is my priority to get myself settled and rid of some of the stress I get the middle rate of care I was tempted to apply for PIP but I worry I could lose what I have now and things are already tight. I am seeing social worker on Thursday my daughter is coming with me we have a busy week this week. Dentist Tuesday not looking forward to that. Wednesday having my hair done at home. Thursday social worker. So it means I will get out a few days even if it's just for the dentist lol. I don't know how I will cope if the social worker can't help that's going to be the tough part he only works Wednesday and Thursday's I have his name but the GP didn't seem to know anything about it or what's going on with mental health team it's all left for me to phone them. But as I'm seeing social worker where I see shrink then he may have more details on it. I hope you have slept and feel a little better now from your fall. Jackie xx
Sorry Jackie, been no use to anyone this weekend. No matter how old our kids get, we still want them to follow Mum's advice because we know, we've been there! You understand your daughter better than she understands you! I agree, your top priority must be to move to a better area, where you can sleep!!!! meet different people, make new friends! It doesn't sound an unreasonable request does it? I hope things go well this week. Dentist: boo Hairdressers: hooray! Social Worker: please help!
I'm still in pain. My right knee still feels bruised but no bruise shows, also swollen and in places completely numb. everything else, ie. Fatigue, FM, Arthritis and Fluid Retention as to be expected after a fall, slightly worse than usual. My GP is back on Tuesday, so I think I will call her then.
I am still awake my eyes hurt my head aches, my hips and knees ache and I just want to sleep the helicopter (fan) is going above my head I was trying to sleep and they start opening and closing drawers it's always really late at night and 6 in the morning and goes on for an hour. I really hope the Social worker can help the stupid thing is the woman in the bungalow would still take this place as she is being affected mentally in her home and is having to bid every week but there is nothing near where her daughter lives which is what she needs because her daughter is going through chemo for cancer at the moment that was why the exchange was so perfect. I would have had no one above me. It has a small garden with washing line and everything for disabled including a shower over the bath with handrails. I still feel it was wrong them saying I couldn't have it because I wasn't 60 if that isn't ageism what is also there are others live in those bungalows under 60. It would have worked for both of us. Well going to try and sleep tomorrow I really hope you get some good sleep take care Jackie x
point 1. you're not exactly young and throwing wild parties, not disturbing 60+ and 2. your disabled. if you have to go elsewhere it would cost the council to put in grab rails etc. this does not make sense! Not being nosey, whereabouts do you live? if you're not comfortable saying I wont be offended. might not be wise to say actually, you never know who may read these messages, not safe. sounds just like my local council! this is all so wrong. I wish I could help. you're already too unwell, and you need this social worker to understand how badly you are being affected by these neighbours and sleepless, isolated, anxiety etc.
i'll message you tomorrow, still hoping you get some peace. G'night Tulip xx
Hi Tulip, let's say I live in one of the rough areas of here not too far from the psychiatric clinic we used to joke with kids that it was Indian Territory the Cowboys and Indian i mean not any other disrespect. Just from the old films. I upped the pills to the max of 300 last night and still didn't sleep until 4 then woken again by upstairs alarm clock and the usual rummaging through drawers and walking round and round the room. I managed to sleep a bit more when that had stopped but not much. I hopeyouhad a good night. Jackie xx
I slept better last night than for quite a while. my brain cells still not up to much! with that fact in mind, please bear in mind I might be missing something. do you mean you're not living far from me? or is cryptic just too complex for me in my current brainless condition? if we come under the same local authority for social housing, i'm just wondering whether I can help you with a tip or 2 that have produced results for me in the past? could be wrong but nothing to lose by trying!
I need to go for a snooze. chat later if you're about. Tulip xx
I am so pleased that you had a better night. I know what you mean about the brain cells i think mine are dying off. I am almost sure on one of your messages you mentioned where you lived but i have looked back to see but couldn't find it but yes the clues were cryptic for that reason. I have today had a letter back from the MP i emailed and when i was looking back at your message when you mentioned contacting them the letter he has sent says the same thing that he has no power to overturn decisions by the council however he has written to the chief Executive and will contact me back when he hears back. he has also sent a copy of my email attached to the letter he has written to the CE and sent me a copy of that letter. So will have to see if anything helps now. Spent a couple of hours with my daughter this morning. She was told in her letter that her PIP would be in her account today but it hasn't gone in so she telephoned them and they said it has to be authorised so might be in tomorrow if not in by Wednesday then to call them again. I mean she's only waited since April last year if she owed them money they would be on her like a shot but the other way around they drag there heals. Its crazy.
I hope you have managed to have a dose this afternoon. I am freezing but it says the temperature is not even that cold. I'm going to try and do a bit of cross stitch now. if i can thaw my hands out lol.
I get it now. I ended up on the floor one night, stuck in the cold and in agony for hours. I then saw my tablet was in reach, the best option I could think of was to post on here, if anyone was about to dial 999 and gave my address. my daughter changed the key safe number and Em removed the post for my protection.
I wondered, if you wanted to 'private message', i'm happy to give you my landline number, or I have Sky Talk Unlimited (landlines free) and i'll call you, or send you my email address, whatever you feel comfortable with, or even pop in for tea/coffee if you feel well enough. I wont be offended if you would rather maintain your privacy. Take care Tulip xx
No I don't mind talking or emailing I was looking for where I could private message you the other day but couldn't find it I know there is somewhere on here.
Glad you are getting something sorted through your MP Lenny, I hope mine will be as forthcoming as i am determined to fight this thing because to not fight means the end for me and so i have to fight it. x
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