i spend my life apologising. feel need to apologise here before i start. at least i know you guys wont hold it against me. it just gets too much. my gp gave me steroid injection last week, hoping to make things a bit easier.
I'm lucky to live in council bungalow, i love it here. since april 2014, trying to organise installing central heating. what with 1 thing and another still trying. my problem now is, lots of people have been working out where to put me, cant be here whilst it's done, wont bore you with details but down to health again of course. Now that I have somewhere to go, sometime after 9th March, i dont think i can do it. next winter I would regret that of course. Tomorrow I have to give the go ahead. Or not. I'm sure i would live to regret saying no, or regret saying yes. and i would feel so guilty if i said no at this stage after all the work people have done to try to help.
Next, the tricky thing. Family. down to me. i work so hard telling them just how 'fine' i am, then get so miffed when it appears they believe me. the thoughts in my head, things i do want to say but again, i would live to regret, VERY much.
i dont think that steroid injection did anything at all. i'm fed up and angry that i cannot live the life i want, cannot be the person i should be, and there isn't a pill or medicine to change that.
i get these feelings from time to time, and i know from past experience this will pass, even though it doesn't feel like it right now. Tulip x
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Don't ever apologise for feeling down Tulip as we all get those days when life and the decisions we have to make seem like mountains towering above us with no way to see over the peaks. If it is at all possible try and go for the central heating as I am sure it will make such a difference to your life. I know that when I am cold every muscle and joint in my body just seems to scream with the pain. I went to a club I attend this morning where there was something wrong with the central heating so I was froze and everything started to hurt so bad it was agony to drive the short distance home and get in and out of the car. On the way home I was praying that the OH would have put our heating on, I just think you would find it an absolute Godsend. Think of getting up in the morning to warmth all over the place it is worth a few weeks of hardship to have that I really think you will find an improvement in your health.
I don;t know whether you have had a steroid injection before but my friend who has them quite regularly found that the last one didn't seem to kick in immediately so lets keep our fingers crossed that that is what is happening in your case.
As far as family is concerned I think we often tread that tightrope that we want to hide from them what is really happening with our bodies and how we feel about it but when things are bad feel resentful that they are not mind readers and can tell exactly what is happening to us. I know I am as guilty as the next person at doing this, lets be honest we are not saints we are only human so don;t beat yourself up about it.
Sending you soft hugs and hope whatever you decide turns out for the best.xxx
I know you are absolutely right. it's the size of this peak is beyond the beyond.... i've had the steroid injections too many times. this one kicked in by the next morning (Thutsday) after a good night sleep and i thought YEH! too soon, been getting worse all day. Anger is pointless too. All I've had from my GP is kindness, best care ever, but she doesn't have a magic wand. My family dont stand a chance in getting it right either. Not their fault, or mine, just the way it is.
Thank you for the support. Much appreciated. Tulip xx
Ring up family and ask them to deliver a pot for you.
I had spend months in hospital with one small sick chick and all I wanted was daffs. My mother made me a lovely cross stitch picture as we weren't allowed flowers on the ward, I am looking at it right now.
Nothing like flowers to shore up a flagging spirit.
And it has to be said the spirit has a way of falling to her knees when deprived of a energy and a pain free body and who can blame her!
Hi Tulips, I have been suffering more than usual and its Daffodils that are special to me. I have put a vase of then on the kitchen window so whenever i am in the kitchen the the sight and smell is a helpful reminder that spring will soon be sprung. Better day are not far away so hang on in there.
I just wanted to say i know where you are coming from and things that would seem Ok to others may be different when you have fibro. Could you see how you could cope Ok during the time the central heating was fitted? make some plans for how to cope? I have found two books helpful with these sorts of feelings, one is called Full Catastrophe Living and is about mindfulness and illness, the other is called Change your thinking with CBT. Hope these maybe could help you too? x
Familiar with the Mindfulness etc. yes, thank you for reminder. My head is beginning to clear a bit now that i've let it out if you know what I mean. Thank you so much for the reply. It all hgelps. Tulip xx
We have all been there and so no apology is ever necessary. Our empathy and understanding of your situation is every thing. To be so brae and fight to keep warm oh it is so important we keep warm the difference is everything.
I know Gin, people on this site are amazing. I dont know how you manage everything. Huge respect and much appreciated! Feel a bit better already. It always helps sending posts. I can get it all out there, nobody gets hurt, and I feel better. I just wish I could get into a position where I could give the support as well as receive it. My darling hubbie died 2010, and I looked after him until he went. My inner self has never adjusted from being the carer to the caree! Very frustrating! Tulip xx
Hi I'm 34 and a mother of three beautiful boys. I'm currently going through the process of being dignosed with fibromyalgia. I'm scared the pain is horrible the tiredness overwhelming. I'm the sole provider for my family I work 12 hour night shifts on an emi unit. Very aggressive dementia patients. I'm struggling to cope I feel useless when I finish work I could cry with the pain but then I don't sleep I feel like I'm trapped like I'm letting my husband and kids down I don't know what to do. I feel alone. Sorry to be so morbid but I needed to get this out .
Absolutely, 'letting it out' is a large part of why this site is here! it's tough to understand the impact of this crippling condition unless you've been there. I hope you find a way to get some support for yourself. your family need you, but you need to help yourself first. i wish i could think of something more helpful from practical point of view, but i do wish you well. tulip xx
I see where you're coming from. I've had a lesser but similar problem. A few years down the line will you be able to cope with Central heating being fitted, when you may really need it? If it were me, I'd go for it but don't let them roll you over - cutting corners in your "vulnerable" position. Where on earth do you live? It's irrelevant but I'm amazed your council hasn't already fitted it as a "responsible" landlord.
my heating now is Economy 7, no gas here at the moment. The heaters (x2) in the lounge, 1 barely works, the other not at all. ok unless it's freezing. the hall heater is ok, as is my bedroom. the system is ancient and I know at some stage i will have no choice. I'm also worried that this place is falling apart at the seams, with subsidence, windows etc. I could end up losing it altogether. I couldn't bare it. i'm totally housebound now. i have so many complex health issues, at aged 53 i'm aware i probably wont live to old age. my riser-recliner is broken, i generally live in my bedroom. it's warmer, and has a hospital type bed, very comfortable. now i want to apologise again! It is all too much. I've been thinking, I think tomorrow when she calls I will agree to go ahead, Tuesday I will call my GP (not there Mondays) I have been asked to go into residential care for a week while they do the work - really does NOT appeal! they will do a financial assessment to see what I can (HA!) afford to pay towards the cost. Last time they did that I was informed I could pay HUGE amount towards cost personal care as well as domestic, my GP asked me if I had 'private means!'. made my own arrangements which works well. Whilst in residential care, I cannot use my own carer. How on earth do they expect me to manage all this? I cant do it. Feel like barricading myself in and disconnecting the phone. I'm really not able to face it. mentally or physically. i am sorry, not fair to put all this on anyone else. my decision is, and thank you for your support, i've decided not to make any decisions until after I've spoken to my GP. if they cant do that, it's not happening, not at the moment. Thank you God that I have such a caring GP, and many thanks to all you guys for the help and support. I think now i can go to sleep, which is very much needed. Tulip xx
Wow, as if you don't have enough going on. I think it shows despite the training the decision makers haven't a clue how hard it is to live on a tight budget. Is there anyone nearby who can be close? So often there's not. .
Yes it is fair to put some of this on someone else, but I choose VERY carefully. I'm wary of things going wrong. I think the doc HAD to ask about your means but the answer is "NO". When I get a similar question the answer is "I have savings of £ . . ., it doesn't go far" It's well below any threshold and really wont go anywhere.
I have economy 7. It sounds as though your council is not engaged. Mine is fairly good but left hand and right hand etc.
Gas has just been removed from my flat. Now the council has decided to install gas CH for all of us so they're going to dig up my path before the last lot of concrete has properly dried. D'oh.
I'm sorry we're all so thinly spread. Practical help would go such a long way.
morning, not much sleep! social workers do financial assessments based on bank statements & benefits, last time my gp was so stunned by the result she concluded i had a stash of £ hiding away - i took it as a joke, and i think she did too, just not funny!
I do feel better than i did last night and thank you so much, your support was much appreciated.
Have a good day. I'm going to 'bite the bullet' later, call social worker. Tulip xx
I'm with you all the way. That was called stereotyping. People who are comfortably off cant believe the rest of us mere mortals can survive on such a pittance and convince themselves there's something more. Sadly there are a few rogues who do, and therefore give them ammunition
tv is full of documentaries looking at people boasting about claiming benefits and exploiting 'the system', who have no comprehension or even care, how the average struggling tax payer could have any cause for complaint! + They dont seem to understand, where would their money come from if everyone decided to do the same thing? For most of us this is not a lifestyle choice, but we are all getting tarred with the same brush.
I think the social worker rang about an hour ago, I chickened out & couldn't make myself pick up. I'm going to call her in a bit, see what she has to say. wish me luck Tulip xx
done. apptment for visit 4th March. I am confused though. Too many people involved. waiting for my new riser-recliner, financial assessment for respite whilst installation of heating, assessment for working out whether my problems mainly due to poor health and subsequent needs, which I thought I already had! or maybe due to GP request for wheelchair. I already have full disability benefits. She said not to worry, it will get straightened out. It just makes my head ache, I used to be so capable. i'm 53, not 83. Still, it's done, nothing more to do now 'til 4th March, and I need to just let it all rest in the meantime. Thank you for support Tulip xx
I look at as each one gets ticked off it's behind me and I no longer have to think about it. I'm also fortunate that my health is bad but not terrible. I can see 3 things signed off there. You've made the call so can stop worrying about that. Recliner's on the way so that's not to worry anymore. Sadly assessments keep coming ( I suspect in the hope health/circumstances will change). You're getting there and well done
And please believe the social worker, They're paid to get things right.
Please, do not apologise it is not necessary at all. I always say to people that we should do what is best for yourself, so do whatever will be best for you?
I understand what you mean. When it comes to the people on this website I know that apology is not needed or expected, we share so much in common. Life habits ingrained throughout childhood however are hard to change. I have reached some level of peace, but I cant do anything 'til GP is back Tuesday Tulip xx
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i cant do this anymore
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This one is for the ladies - sorry gents (however if your better half is suffering what is in my blog, i will be all ears)
