Worries

skezier

Hi Everyone,

I am not sure if this will be a rant or a scream or maybe just a cry for someone to say it will be ok :? I have had oa since my late teens and have had problems with the fevers, tiredness and swellings for a few years, now been told its pa as well. Was put on sulfa back in July, now its been upped to the top dose and as before I got yet more headache and feel vaguely sick (I am already on anti emetics so at least I am not being sick)

I have useless doctors a very good rumo and thankfully a good practice nurse. Other problems are gaining ground fast and just of late I have had real problems with circulation. My last nurses appointment and the rumo yesterday have got me slightly concerned and sort of upset really........ That and the comments made by a paramedic and well does anyone else go through this bone thing alone? I can't be the only one who doesn't have a partner or someone living in the place as well.......

It seems of late that they are making the comment 'your alone aren't you?' and then look serious..... Does it matter? My last partner legged it when I became ill and the one before that died, and this is kinda upsetting cus I do know I am alone...... AND why!!! Kinda etched on my soul forever actually....... Opps its turning into a rant :roll:

I just wondered why is this becoming an issue with them? Should I be worried? Am I maybe getting over sensitive to it and they re just stating a fact? I guess they know I am alone but why does it suddenly make them keep asking? I feel like I am some substandard person who failed to make sure someone else was there........ Now its turning in to an emotional rant :oops:

Anyway I just wondered if anyone else knows why they keep saying it? On one level I am fairly sure you can survive it alone, I have so far but yet they keep making the point.......... I just wondered why they do. Luv Cris x

elnafinn

Aw, dear Cris

Perhaps you are imagining some of it. I don't mean your symptoms but "the look" you say you are being given when asked or commented on that you live alone. Many people do, through choice or otherwise. Perhaps it may be because they are aware of your "ailments" and your responsibilities and way of life and all that entails and are well aware that this is not easy work to carry out day in and day out. That is how I see it, sitting here tapping away at the keys, after reading your thread.

Luv
Elna x(())

ps if you get "that look" again regarding the "alone thingy", why not ask outright and see what reply you receive?

joyful164

Hi

I agree with the majority. I think they were giving you 'that look' because they are concerned for you.
I think we are all a bit down at the moment, it's that time of the year. We have a long hard winter ahead of us and it's a struggle coping with everyday life, even with a partner sometimes. You are having to think for them, wash for them, feed them, but just a few.
What would you do if your rheumy or doctor or nurse suddenly said to you that they felt you should have some kind of help, a care plan for instance. If they felt you were struggling. Perhaps that's the reason for 'that look'.

I hope you will be feeling a lot better soon.

joy

chris7

Hi Cris

Sorry to read this, I know you have been having a few wobbles lately what with weird blood pressure and all. I'm still trying to learn all the various bits of jargon people use on here and often feel very real sympathy but also sad that I can't offer any help or real support. Can I ask what is pa? I do understand the alone issue, have been in the same position for 10 years and also lost close friends when I reluctantly changed jobs 6 years ago. Think it makes you rely more on your independence out of necessity, which can be a real worry and I find it is hard sometimes not to feel like a complete saddo in a world of couples. :roll:
However we are certainly not the only ones living alone out here and it doesn't make us any less human or important.
Do hope others can offer some support for you on the health issues. In the mean time hang in there and play your loud music!
take care
Chris

skezier

Hi Elna,

I did ask the nurse and she said I had so much to cope with and that to (as she called it) get through it you could do with not being alone. She did say that she wasn't that bothered with the bp thing cus of all thats going wrong with me she would expect it to rise Th odd left arm is cus of the neck and that's being redone (I remember how painful that is and cringe.... )

I'm sorry I am just a bit down and swamped at the mo and worried there is more of my mother in me than I realized? Once the headache allows it I shall stick my head in between the speakers eh......

Hope your having a good day and we still got blue sky and sun! ((( ))) Cris xx

Hi Lynn,

You made me choke up there, nobody asks me how I feel and in its most simplistic form Angry, Scared, Worried, Frightened and Stalked by illness. Oh and really, really, really Tired! Years of counselling, maybe I need more?! :roll:

I don't know what I would do without this forum actually. There's something I got to do and I really have got to and thats upsetting me so badly and probably isn't helping eh? I am struggling to earn an income, I have a way of life I can't face giving up and the Rumo knows that but had I known how hard it would be I should have just left it as a dream and not gone chasing it

Bet you wished you hadn't asked now?

How's you and have you been ok on the MTX? I didn't get given it, he said he would leave that for a lat resort cus of my other problems and upped the sulfa. It might work eh? xx

Hi Joy,

Your probably right about being a bit down. I know I am probably over reacting its just well there is an anniversary coming up and they are even after so many years not good.

I think deep down you are right and the Rumo is dong it from a concern cus just now I don't seem to be too well and we had a chat about 18months ago on the quality of life things and he kinda knows how I feel about my way of life. Its hard sometimes but at least it keeps me going eh? I know I am ok but there are a few health problems at the mo, bless him at least he is trying to sort them out He has asked for the de-nerving to be done again and asked on opinions as to how to make it permanent so maybe things will get easier soon.

I hope you are not over doing it by the way? Cris x

frogmorton

Hi Cris
That wasn't a rant so no need to apologise girl!
You shouldn't be alone really but circumstances have dictated that you are.
I worry about you when you are poorly and wish one of us lived nearer and you could have at least some company when you go to Drs etc.
I think you are manah=ging really really well at home. He may well be thinking how much harder it is for you when you can't offload everything onto someone else when you are poorly.
What he doesn't realise is that sometimes being alone is FAR better than being with a partner who maybe, doesn't pull his/ her weight, puts you down/won't help/makes you feel guilty/a liabilty etc.
I think actually that you should be proud of yourself for what you manage and the fact that you are so very self-reliant :!:
and what's more you're not alone are you?
You have US!!!
Love
Toni xx

skezier

Hi Chris,

pa (I think it may be meant to be psa actually?) is psoriatic arthritis, I hope thats right...... Its one of the autoimmune ones.

Oh Flower you and me both on the couple front and the independence..... One of my biggest faults at times I found close friends are ok if your well but if you are unwell they sort of disappear...... Mind in my case maybe they are worried i shall ask them to help out?

Yep thats what I need...... Once the headaches lifted a bit of Deadmau5 and Goldfrapp with a bit of Trance thrown in should help

I hope your ok and got a bit of sun? x

skezier

Hi Toni,

You just described my ex to a T Especially on the putting down/belittling side

I seem to just be a bit down at the mo and the headaches are 'slightly' annoying and have taken up visiting rights as soon as you take the tablets........ I needs music eh?

I don't know what I would do without you lot actually. There was so much yesterday and maybe I am just realizing I do have problems? :shock: You know I do the Ostrich impersonation so well

I will work on my self esteem eh? Deep down I know whats driving this feeling but I worry about turning into my mother :? :shock: :oops: Though I should have to go some to beat her ((( ))) xx

angel1

Hello my lovely Cris,

I am so sad that you have all these worries, and fears, as well as the physical pain you are suffering.

You and I "speak" quite often, so I do know a bit about your situation. I truly hope you won`t take offence when I say that I feel you ought to apply for some financial help - DLA - as you are probably one of the most deserving cases. You have said often that you are fearful of going down that road, but you are entitled to do so. It won`t take away your physical stuff, but it would help to ease the pressure for you in so many other ways.
Why not contact CAB, and go along just for a chat? No one will force you to do anything that you don`t feel comfortable doing.

As for the comments made about being alone, I really believe they are made out of genuine concern for you. As someone in that position myself though, I appreciate how we really don`t need to be constantly reminded of the fact........Much love.......Ange.

frogmorton

I will work on my self esteem eh? Deep down I know whats driving this feeling but I worry about turning into my mother :? :shock: :oops: Though I should have to go some to beat her ((( ))) xx[/quote]

You will NEVER be your Mother!
Nothing like - not possible (he he!)
and who needs a 'current' like your ex?
Love
Toni x

skezier

Hi Lynn,

Its not flippant and I think you are really right as well. The logistics are a problem, I don't have a digger. I think its the reason I am so swamped and thats been for a while as well. One is this week, I just am not sure which.

Glad you are taking the MTX and I really hope it works well for you. I didn't get it but f the sulfa hasn't worked by may I might. ((( ))) and xx

Hi Ange,

You know I haven't got hope of getting it. I used to get it long ago but after they operated on my back I became an ostrich Not a good week for me this one, I shall be glad to see the back of it actually...... I might pp into the CAB and see what my options re cus I won't get support from the doctors at all. I think you need that? I haven't got any spare fight in me now a days you know but I am now doing this with a thumping base back track ((( ))) xx

skezier

Hi Toni I do worry ever since they told me it has hereditary links........ xx

frogmorton

skezier wrote:

Hi Toni I do worry ever since they told me it has hereditary links........ xx

You can fight it :shock: :shock:
and win :!: :!:
Toni x

page35

Cris
i dont really know what to say
i dont know anything about your mother or your ex but i do know you are truly a lovely, kind, strong, good hearted lady and you have a load to deal with right now.
i think docs are prob just concerned for you and dont mean anything by it.
they all keep telling me i am young for all this, nurse said this to me yesterday and i keep thinking i know, what do you want me to do about it?? it upset me abit cos makes me think they dont see many my age so i am different. but i know they dont mean it like that.
well you get that goldfrap on
talk to you soon
page

trisher

Hi Cris

For years and years now, I have always been asked these questions Cris. In the begining I got my hubby to take time off work just to prove that I had someone at home with me. I know how you must feel and how it gets to you. Last week because hubby is not well, I went on my own, I was asked the same question once again, honestley.

You are not substandard or anything please don't think that. Maybe they see the gentle nature of you, and the medical problems that you have to deal with.

Please re read what you have written, fever, headaches, tiredness swellings plus all the other medical problems that you have to cope with, then maybe you have answerd your own questions. It could be they really like you as a person and just concerned about your welfare Cris, or how courageous you really are like we all do .

It could also be, that it is them that are insecure, and think that given your medical history they would never be able to cope alone and do all what you do at all.

One day I will tell you something and then you might be able to understand better what I'm trying to say.

All my love trisher xxx

dachshund

Hi Cris.
I feel so sorry for you. you've had so manny problems and i so wish i could help you.
you seem a person that can cope with everything.and to me you know the right thing to do and say.
i think when you live on your own it make's you think you have to cope with it so it makes you stronger and people can think ho she's alright she can cope she's on her own.
i'm sorry if i'm going on i hope you can understand what i mean. i hope every thing works out as you have enough to keep you going with out more worries, you are some one i care about and i dont like to think of you worrying. joan xx

woodbon

Hi, I think anyone who lives alone is stronger than me. Even when well, the thought of being alone frightened me.

You are a very strong person, because life has made you that way, but you could just wollow in self pity. The fact that you don't speaks louder than any words.

At the moment, being not so well must be getting you down, I think you were right to ask the nurse. It seems that they are caring for you. They may be thinking as well as having an emotional support you could do with someone to help with practical things like shopping and cooking and so on. I'm sure its not a judement thing, just a practical thing. Nurse and doctors can arrange for you to have someone come in to help you with shopping and personal and cooking if you find it hard.

I hope things go well, by the way I took my bp, and my left and right arm are different, but I have neck problems too, I wonder if its that causing mine? Love Sue

skezier

Hi Toni,

Oh I shan't go without a fight xx

Hi Page,

I think you may be right there and in my case I sort of look for hidden meanings, especially if I am already running scared :? They probably don't mean anything by it....... In your case either. i wish sometimes they knew how vulnerable we are deep down eh? Luv Bubbles (by the lorry load) and a ((( ))) Cris xx

Hi Trisher,

Well from what you said maybe its a standard question? I love the reverse roll thing, I never thought of that.

Hope you are ok an your husband is getting there?

Love and a hug,

Cris xx

skezier

Hi Joan,

How are you and Sue doing? You people are very good cus you have made me see it in a different way to how I did I guess. He does always call me a nice lady, and he likes the fact I don't seem too worn down and take things in my stride...... I normally do but there was a lot yesterday and for once I came out of the sand and stopped being an ostrich and guess I got scared in a way. Then I began to worry........ I sort of got my head back in the sand now and well the headaches gone till the next tablets and I shall go put my sheepsis to bed...... That always makes me feel better xx

Hi Sue,

Now that is interesting about your bp as well. The Rumo had the letter from the hospital and the ones taken the other day a the doctors and said the fact it became the same following the temp denerving would suggest its to do with the pressure my neck is putting on the veins.

Mine was 30 on the top and 25 on the bottom different when the nurse took it. He said he will ask for the denervig again (Oh that so hurts... :shock: ) and if it returns to normal after then we know. If it doesn't then further tests I guess?

My swelling is predominantly on the left, there's a bit up by the skull and a lot more coming down the middle and left side of my neck. The shoulder is pins and needles and the muscles are usually in spasm on the left unless I have the trigger point jabs still being effective. So I do wonder if any of that would fit yours? Mind you have a bit of bone and is that on the same side as the higher bp reading? It might be worth mentioning it to the physio and maybe physio will bring yours back in line? I will keep my fingers crossed for you. Luv Cris x

minky67

Hi Cris,i really appologies for not seeing your post til now.
i really do think you should just enquire about benefits,for the xxx amount that your not earning & the struggle your got try to earn a living.
as for DLA i think you can just put down consultant for contact about your condition.or rhymy nurse.i do know they dont like to contact them for cost reasons.but if you have letters & reports they can be sent in with your claim,CAB is a good place to start.They helped me fill my renewal in & were great.

your way of life & where you live has nothing to do with you claim either.
you need regular money coming in to support you.
that would be 1 less thing to worry about surely.
hope that helps a little.
i'll pm you later.
luv debs

woodbon

HI Cris,
I've just done it again and had the same result, I'll ask and find out whats going on, strange! My bp in the left side with the osteophate is lower by just over 10 then my right side. I'll definately find out about that because one strange reading is a fluke but when I do it again and find the same result, thats odd! Thanks for pointing it out, its not the sort of thing I would do normally, I always use the left arm for my bp as I'm r/handed.

I hope you are feeling a bit better, I'm sure your medics just want you to have all the help you need. Lots of love Sue

trisher

Hi Sue

My old district nurse was a sister and told me it has something to do with high and low blood pressure. I have low blood pressure.
Don't know if that helps a bit

trisherxx

skezier

Hi Debs,

I must see mustn't I? I have just applied for tax credits and if they come it will help a bit. I will go and see the CAB and well I am sure the Rumo would support my claim but I know the doctors wouldn't be any good, they haven't got a clue as I don't go and see them Maybe I should write to the practise manager now......

Hey don't you worry about being late and I will go get us some tea xx

Hi Sue,

Sorry but it makes me feel better that there is 2 of us They weren't too bothered with mine at 10, its when it went to 20 and now 30 difference they are starting to look a bit puzzled.

Hey did I read somewhere you may have raynaud's? Sorry if I didn't its just it could be that as mine may well be the circulating thing, its just this swelling is right where the main blood vessels are and he agreed its very possible. It was my theory sort of, well me and the poor nurse who has to get a line in cus I was denerved in April and the drip before that showed a different reading between both arms and the one in may they were the same give or take 5. I will let you know what happens when I am next denerved bu if you see your doctor just mention it cus they are only surmising mine is the swelling but it was part my theory initially....... and some of those can be quite bazaar Please don't worry over yours cus mines been odd fr quite a while now and its a curiosity thing really. Luv Cris x

Wonkylegs

HI Cris,

well .... I think ost of what I wanted to say has been very well put already by Elna, Lynn, Ange & Toni ( to name a few).

I also think that Sue's point about the help that is available is a very vaild one - I think these days they try to limit the offers of help to those who really really need it, for whatever reason, as the budgets are so stretched.

However, that does not mean that it isn't there for those who do need it - perhaps one of the ways they (doctors/nurses/ etc) gauge that is by working out who ticks the most boxes. Hence the hundreds of questions which, when you are feeling so low, feel more like an inquisition than friendly enquiries.

I do think mostly it is out of care and concern for you , and perhapsthe rest is a little bit of back-covering for them, as they need to be aware of your situation to ensure they give you the appropriate level of care. That's their problem though, not yours!

You have lived your dream, and made it work. that is more than some of us who are far less well have managed, and you should be proud of that. You give so much of yourself, perhaps you have forgotten how to accept some of the help that you so freely offer to others (I know I find that side of things tough too) but IT is not too late to learn/remember

Do get help from the CAB. Use them for your own ends - that is what they are there for ... and if doing so lets you live your dream for some time longer then isn' it worth it?

finally, (sorry this got so long) I don't know the history thing with your mum, but I know from my own 'mum' issues from the past, that YOU DO NOT have to be like your mum just because you are related ..... you make your own life choices, and they do not have to be a mirror of hers....you are your own person and a great one. BE YOU!

lov e and hugs,
Wonky
& slurps, lick s and wags to you and your employers from littlelegs

joanlawson

Hi Cris

I think people may ask you whether you are alone out of kindness, and to assess how you are likely to be able to cope with your condition. I don't think they mean to be intrusive, but I can understand how irritating it must be.

I am full of admiration for you, as I know that I would find it very difficult to be on my own. You have so much to contend with, and yet you find the time to support other people on this forum.

As someone said, I wish we lived near you. You would get plenty of volunteers to help you, I'm sure.

Joan

suncatcher

even when someone lives with you they carnt stop living going to work to be with you. I go to all appointments by self. when i had hydro they wanted me for six wks i said i aint got no one to ave son the lady on phone said i dont belive that its only half hour you must have someone you can leave him with. no and actualy three hours i have to get there hospital 4 miles away, dont drive two bus or taxi job. then u get there get changed wait till your turn go in half hour session get dressed then journey back so its more than half hour then. i had row with this woman. i said leave it til six wk school break hubby home he is a teacher. the lady phoned again in few months not in holiday time they wanted me. have u sorted your you sorted your childcare problem she said in sarcastic rude way i had go back and repeated get me app in six wk holiday i will have someone to care for son. i dont belive this she said. next time she got someone else to phone me and they finally gave me the appoitment in the six wk holiday.
so u see even if you have got someone have they got the time to help out often than not no. that happened to me four years ago. I still have the you aint got anyone with you line occasionaly off alsorts of people. i go alone. i dont live near family friend carnt help they work got own lives elderly parents to care for etc. I like doing things for self but i find other peoples attitudes bad.
im sorry u are unwell and feel alone but you are not u have us all and we care. you have a good rhumy and nurse pity u could not change your docs. i hope you can find some help with your meds and they start working for you soon from joanne