Strange old day

Strange old day

So it's been a strange old day, I feel I've been on a rollercoaster ride and I want to get off. I guess my situation has become clear here today. So I won't go on too much about it all. I can hear my neighbours from my window, one of them is shouting out "I'm dying!" In an overly dramatic way, it's aimed at me, these people have made my life hell since they moved in there...and now it's clearly a joke as word gets round what has happened to me and my new diagnosis of rheumatoid lung....I dont know why I'm even posting this here, it's not really even important at all....but still, I've done so much to help so many people around me. I spent two weeks in hospital and have been home five days, but no one bothered to check on my kids whilst I was gone, I'm lucky my older sons are old enough to take responsibility of the house and their younger siblings, but nobody cared. Two years ago I had literally hundreds of "friends" my phone never stopped and I drove around everywhere doing everything for everyone.....then I got rheumatoid arthritis, and my world stopped. I've wasted two years mostly bed bound because of the pain, had I known I would end up fatally ill at 38 I wouldn't have waited to get better to carry on living, now all I can do is sit here and wait. Now I'm going to ask advice, (dons tin hat) please do not come to rant on the steroid debate, believe me I know the ramifications but I'm currently on 30mgs Prednisone daily, it is my only option at this time and whilst not ideal, as my lungs are seriously involved, they are right now the only thing keeping me alive. However at 30mgs (heck I'm meant to taper eventually to 10mgs) I and my DR's expected that my rheumatoid arthritis would not flare up, even without any RA drugs, steroids should be keeping the inflammation down across the board....but omg it's really not as shown in the present photo. The pain is hitting full force across my whole body and I'm already on fairly heavy duty pain relief patches. I cannot go on the ra drugs as my lungs are beyond damaged :-o I don't know what to do. But I stepped in the kids paddling pool this evening, I haven't tried anything like that for two years whilst this disease has ravaged me....I guess the dramatic "I'm dying!" Bit which may seem funny to other has at least nudged me in the right direction that I am doing things just in hopes of some enjoyment. But my joints really are on fire :(

42 Replies

  • I'm sorry you are having a difficult time. Ignor your ignorant neighbours.

  • Thank you Suzanne sale, I usually do just ignore them to be fair, they've never been pleasant people at the best of times, I don't know why I would expect any different from them but I did x

  • Hi Orchidcass,

    Good to hear your dulcet tones today. Firstly your neighbors are clearly ignorant half-wits. You could quietly record them and then complain to the police or, if they are in housing association housing complain to them as it is a disability hate crime but to be honest with you your energies will probably be spent on positive time with your boys... Paddling pool weather again today if you're up for it!!!

    Take care of yourself


  • Thank you Ali :) yes my energy is better spent elsewhere. Since ibe had ra and been on the meds, aside from the pain holding me back things like photosensitive reactions to the drugs have been a big problem for me and effectively put a stop to any hopes of enjoying the being off them is pretty hard but there are positives in every situation x

  • Hi, I really feel for you, life can be so cruel can't it. There's a guy who posts on here Mattcass, he has servere lung problems, I think I'm right in saying he's had a lung transplant. I know he's now doing well. Maybe he will read your post or maybe you could look up his past posts. Lots of hugs.

  • Thanks caza that's really helpful of you, yes I'm sure I recall the name mattcass as a similar case. I'll go find him, I'd love to hear of anyone changing the prognosis or having a better quality of life for however long we are granted. Xxx

  • Caza he hasn't had it yet he is on the list though so anytime as soon as a lung comes available.xxxxx

  • Thanks Sylvi, I'm I right in thinking he is doing better though, back at work part time?

  • That in itself is great to hear. I have a sad realisation that I think my lungs have been deteriorating much longer than its been recognised medically, I doubt very much I will ever qualify for a lung transplant but the hope that it's even a remote possibility is better than no hope at all. Sorry it's took me a while to get on today, so much is going on, my head is swimming, my body is swelling and I don't know where to start lol

  • Yes I forgot to mention Mattcass - please do read his posts and take some strength from them if you can.

    The photosensitivity is a problem - I am lucky in that I have a south facing garden so can sit at a small table and have breakfast in the early morning sun on days like these but I'll be scuttling for the shade by 9:30ish and sneaking out again after 4pmish...I'm beginning to sound like some kinda mole here 😎

    Are your younger ones on school holidays yet... I teach in Leicestershire and we broke up last Friday but I think we are a week earlier than most.

    Have a comparatively good day


  • They have just left school for their last day and are walking home to me now, gosh when they were all young it was so manic at times and the summer holidays would come and I'd think oh my god I can't cope, like most parents I would usually be completely wrecked by week four. Now I'm so glad they will be home with me the whole time for six long glorious weeks, no having to moan at them to do homework or get up at 6am. I really will do everything in my power to enjoy these next few weeks. I would love to take them on holiday but we can't afford that now. We did however manage it in 2014 when I was first diagnosed, I'd had a long battle in appeal to get my pip...right up till I was fully crippled by the RA, it didn't make any of it any easier, so when I finally won my appeal, the last time I was able to drive my car, we went down to the seaside for a week in a caravan. With 7 kids and me it cost me every bit of my backdated payment. People told me it was wreckless to spend it on that but I knew I would not be able bodied much longer...and I was right. I'm so glad we had that week, it was the best. I've been single since I was pregnant with my daughter nearly 12 now, we never had much, I'd worked as a gardener, I'd worked at McDonald's and studied for degrees but I never really got going, I live in social housing on an estate and I was I suppose stereotypical of the single mum four kids no was so tight so we never did fun things, it took me to be disabled before I stopped worrying where the next loaf of bread was coming from, as much as people see us as a burden on the state, it really shouldn't be that way. Now my children are growing up and I have raised them well, my eldest is a bit of a genius and works very hard earns very well and pays much in taxes, my parents always worked every hour and my 19 year old son has taken the burden off the government by being my carer for the last two years and is continuing through this most difficult stage, his friends are having fun going to the pub, working and earning well whilst he gets £60 a week to do the job of many. I've fostered over the years and done so much for surprises me endlessly how cruel and cold hearted people can be in this world....but that won't change them. Whoever said about karma, yea I do believe in that and thought it myself many times. People do judge and stereotype and unless it is happening in their lives it's easy to make light of. Sorry god I keep rambling every time I get talking lol. Everything stimulates a memory or a thought. But I'm sure you all can fathom some sense from it all :)

  • It really gets my goat when people criticize single moms....poverty is not a choice!!!.....I live in Vancouver BC where social housing is not a high priority. The regentrification is causing many social and economic problems here.... Sorry I could go on, but I wont....

    Please don't let your self esteem go down the toilet. You are going through a rough time now, but "now" is just a moment in time...You have dedicated yourself to your kids. They love you whether or not you have money...Chin up, don't let idiots and morons bring you down.

    Take care


  • Oh my god some people are so horrid aren't they. You take no notice of them you do what is best for you and your family and if it is possibel can you move away from these horrible people.

    If steroids are the only thing helping you and maybe keeping you alive don't feel guilty for taking them. Sending oodles of hugs your way.xxxxx

  • Like you need that. I do hope you're rehoused & quickly. Hopefully after yesterday things don't seem so bleak this morning, the support here can be uplifting when everything seems such a struggle, just to escape for a while.

    I left a message on another post about Matt but I see you're already aware so I hope once he's in a position to do so he'll reply to you.

    We've had downpours, thunder & lightning overnight & this morning on the Fylde Coast. Now the sun's out but there's not much freshness in the air, it's still muggy & the humidity is having a real go at my joints. I hope it's still nice where you are. x

  • My Rheumatology consultant phoned me today, she says that all her patients are coming in swollen and not to panic, she said to up the prednisolone to 40mgs for a week to regain some control of the swelling, it's sad to think everyone is suffering, I'm really aware with my children that this heat is making them all struggle, it is somewhat comforting though that the extreme swelling is not just me and that it's probably the weather causing it not just my body shutting down. I hope it eases up for all of us soon. Thanks Hun x

  • I can't begin to understand some people's cruelty, I really can't. Keep your children close, they will be your support and reason for going on. I'm so sorry you have to contend with this sort of behaviour. As others have said suerly there are some authorities who can help you to put an end to this harassment. I wish you all the very best and please keep us up to date. Take care darlin. Jean XX

  • Hi some people really are ignorant and cruel , hope you get sorted out as you have enough to deal with xxx

  • Hi orchidcass

    I can only echo what others have already said. I'm no saint but I can't even begin to get my head around the motivation of people like that. 😡

    If you believe in karma then take solace in the fact they've got some bad stuff coming their way. 😎

    At least there are folk in here that care, for what it's worth. And you have massive respect for coping with 5 children regardless of any health issues 👬👫🏃🏼

    I've only got 2 and they use pretty much all I've got to give. 😓

    On the other hand they give me the strength to go on some days.

    Gotta love 'em. ❤️

    Take care.


  • So sorry to hear about your pain and awful awful neighbours - its not much consolation but most people these days seem to have dreadful neighbours. Hope you feeling better today its a little cooler - take care x

  • some people are just plain ignorant pigs, I am afraid it sounds like you have acquired some as neighbours. If you a housing tenant ask to speak to your community officer and keep a diary of what's going on. you may not like the next bit but see if you can move, dont give any info to next door on what you are doing. make sure you keep a diary and any other information as to their behaviour. it sounds like a hate crime aimed at you, it can and should be dealt with as such.

    As for waiting for god dont, cause its a long haul, look at simply things you can do, putting your feet in the paddling pool.

    try to make a plan for the day, doesn't matter if you cant do it all,just try. Speak to your doctor/social to see if they can arrange some help.

    and vent your anger and feelings on here everyday if that helps,

    warmest Craig

  • Thank you so much Craig, yes to be honest I was meant to make logs and report to the council, pretty much since they moved in. They are known as "the toughest on the estate" *rolls eyes* the council actually approached me and asked me to do so....but I didn't, they already made my life hell and I couldn't see it getting any better by doing that at the time. Now looking back and the situation I find myself in. I genuinely don't have the energy now, I'm hoping my need for a move will be now pushed through, it's obvious for many reasons how very much I need the move, I'm also dreading the prospect of moving house. When I became rapidly disabled everything just stopped completely, everything needed me to do too many things, so I didn't. I haven't even gone to sort out my blue badge....I've been entitled to one for ages but haven't been able to drive but it would sure help my mum who takes me to all my appointments (my son/carer doesn't drive yet, even though we are technically entitled to help with that too) and spent much time parked at the hospital whilst I was admitted. It all has seemed so much hard work I didn't go dealing with it. I've had years of social anxiety before all these diseases took over my body, I get severe anxiety to make a phone call. I really did just need someone to come in and take over all these things....but there never was anyone, except the kids x

  • The mental picture of your neighbours is becoming a little clearer now and your options do indeed seem limited. I have known people like that and they are often nothing short of psychopaths. Unfortunately not a lot will deter them (as you have obviously worked out) and it would seem moving is your best bet. Unless you wait for the inevitable prison sentence (not an option really).

    Craig's advice would seem the way forward for you, even if you just record what happens from last night. It doesn't have to be grand or time consuming, just a notebook, a notepad file on your computer / tablet (or even just some paper) with a date and description of each incident, even if it's only a stare or muttered under the breath. It would back up your claim for a move, maybe expedite things.

    Oh, and you can do all of the things needed for a blue badge online / the phone - or at least you can where I live. After submitting a claim I got fed up waiting and phoned them and got one about a week later. When asked how far I could walk I (truthfully at the time) said I can't even stand up without falling over.

    All the best.


  • Yes I am glad you see how it is haha. I'm writing so many things down right now that it makes sense to make notes about that as well. At the moment I don't have much to lose. These issues have been bug bears in my life for many years and it felt much harder as lost the use of my body. Kind if like being imprisoned in my very own little hell. These people were very much involved in my life before they moved in next door, I thought they were friends ...they are simply narcissistic psychopaths, they had a big part in leading me into a breakdown back in 06. Then in 2011 they moved in next door to me. My life was at the track the best it had ever been and I was sitting for my degree. And honestly that was the beginning of all this...I think that's called "sod's law"

  • Life was on track*

  • Maybe the 'constant anxiety' (aka chronic stress) and the stress of studying was one of the triggers? Was for me, I'm pretty sure.

  • Yes I think it was partly. The week I began my university degree I was undergoing surgery for the gallbladder issue, it was incredibly complicated for a routine surgery and I had been really sick with that for six months before I got to surgery....I think I've explained it here somewhere but it was pretty bad and I think that triggered everything, by the end of my first year I completed my exams nd finals and gained my certificates but I was wrecked completely. I quit uni hoping to get back once I got better, then one by one I gained all my diagnoses ....I think that was the trigger

  • I'm sure there's a certain irony that the things we push ourselves to do because we want a better life end up, hmm, changing it in ways we couldn't possibly have imagined. I'd not long since started the job I went to uni for, got a flat, girlfriend, company car and all that jazz. And then 'boom'.

    Oh well, the girlfriend is now my wife so it didn't all turn out bad. 😀

    And the kids ❤️ Where would we be without them? (On a beach enjoying ourselves?🤔).

  • Haha ade yes we probably would. This disease is awful. I know what's gone on with me recently is the extreme version but every last person who has Rheumatoid disease suffers immeasurable pain and it just isn't ever what we expected or planned for. Glad you put a ring on the Mrs though. It's something I regret never having done myself now. My biggest pieceof advice for anyone is live for the moment. Enjoy what you can and don't waste life beating yourself up cos you can bet your bottom dollar that life will beat you up all by itself. I sure never thought my "adult" years would be spent unable to get out my bed x

  • I am truly sorry for the situation you find yourself in, but remeber YOU DIDN'T CAUSE ANY OF THIS ,BUT YOU CAN MAKE IT BETTER. ask the council for help either via yourself or carer.

    we all wish for the knight or my case maiden to ride in on the white charger to rescue you. But unless we send out a big SOS via the doctor,local MP,councillors,social service , police, they all assume you are coping quite clearly you are not. remember ASSUME = ass out u and me.

    if you have any one you trust like family,friends please ask them to call the council and explain what is going on. It's clear by the sound of the things that they knew what things they were placing next to you, so they will now need to look at how to assist you. they will scream and blubber about cost and cuts, but you need to stick your guns, if they have an out of hours phone number use every time one of these foul creatures utter a remark, directed at you or your family. make an appointment with the doc asap. Take someone with you who can explain if you dont feel up to it.

    please please dont think you are alone,

    warmest Craig

  • Thank you Craig yes you are so very right. My mother is attending to all this with me....thank God I still have her! We will be going to dr and council together as soon as possible

  • Don't be rude to the pigs. They don't want to be associated with such people. ;)

  • Please don't give up and don't worry about the steroids if there helping , sometimes ignorant people can really put you down you wish they could have your pain just for one day and you know they'd never make fun of you again , I hope your doctor can work something out for you soon because at the moment you don't in a good place , these people on here are great at listening and give good advice hope you pick up soon and don't worry about the steroids I've been on them for 30 Years xx Dawn

  • Thank you Dawn you are right. It may not be ideal for most people and if it wasnt 100% necessary I think most of us would rather not live on them....but if it's all that works then ....well I'm sure not gonna turn them down ;) healing hugs xx

  • Take care xx

  • It's all quite senseless really, like my son says they aren't important and I shouldn't even think about them. They fake friendly neighbour it all the time, I guess I'm a lucky shot to have next door cos I never run out of milk or toilet roll etc they are always happy to ask even though they will have only just been shouting out stuff like that. Pftt whatever they are welcome to their lives

  • I think the word is 'parasites'.

  • Oh I was feeling grumpy too but your problems are so much more. I have incredibly ignorant neighbours who verbally abuse me to my face. They are my freeholders to boot and I just got a letter from solicitors threatening me with all sorts. Like you I am a compassionate person who help everyone but illness really does show who your real friends are. You sound such a good soul yet you get all this crap. Its so unfair. I wish I could come and chat with you. You obviously are strong like most people who suffer constantly. If you want a phone chat let me know OK?


  • Thanks Cathy, bless you neighbours really can make or break a family home. The rest of the world I can close my door on but obnoxious neighbours make sure we all hear every word they've got to say...and mostly it's not the kind of verbal debates I wish to listen to. I do understand. It's been a difficult few weeks to say the least but I think I'm getting my head round things x

  • Good xxxx

  • Hi Orchidcass

    When I started reading your post I thought you must be based overseas. I'm absolutely shocked and horrified to see from your profile that you are living in the UK with such morons for neighbours, courtesy of authorities that knowingly placed them in such close proximity to an already vulnerable resident.

    Your kids do you credit: it's important too for their morale and well-being not to see their mother subjected to such obnoxious behaviour. Please maintain that log of the distressing events: it could and should be your ticket out of what right-minded folk consider a living hell. xx

  • Thanks dodo they are a rare group of people (if you can consider them human at all) but they always seem to be attracted to the likes of me. Kinda like diseases, no matter where I go or what I do they follow me round like a bad smell making my life unbearable. My mum is contacting my GP today with a long list of what I need sorting. I'm glad she's stepping in to deal with it all for me as I'm clearly not getting on top of all this. I mean I am coping, I probably don't seem so here because you guys are listening to all that's going on in my head and I'm very grateful that you are all here. In my actual existence I'm getting on ok really, I mean I can't just sit and cry about all this and now my children are home on school holidays so I can only really open up here. I don't wish to waste my time with them on such unhappy and uncomfortable subjects. I'm holding on to some hope. Im not sure what that is yet but I do think if I get oxygen fitted at home maybe on uniphylin, maybe mattcass will get his transplant and be successful (I sure hope so for the deserves it) and then I can hope for that? Any hope is better than none. It would be so much better if I could get moved quick. This house in unsuitable in so many ways. I attempted a standing bed bath in my downstairs toilet yesterday, my hands when swollen as they are now won't even fit in the tiny basin and my steroid head and body was all crammed into a tight space and I got all flustered and sweaty (sorry gross I know) but it's all I have have available unless I climb the mountainous stairs to my bathroom....which is a no right now :/ I just want to live a hit better than I am!

  • Morning!

    Glad to hear that you're getting some support from mum and hopefully some things will get sorted relatively quickly. In the meantime keep using us for support as well

    All the best


You may also like...