New man on the forum

I'm dissapointed we lost. :roll:

Just thought I would add that your GP can book your rheumi appointment on line with you and you can go through the hospitals and choose the shortest waiting list or the closest. Or whatever suits you. I think if its done by letter they normaly reply within 6 weeks and appointment within 12 weeks of referal. Then if you have to go back I find appointments are between 3 months to 8 months. Thats how I found it works here. I would be interested what they recommend as my rheumi was quite unhelpful apart from the fact its really important to pace yourself and she said what do you expect when you have 4 children to look after. I don't know about anyone else but I would love to have a couple of weeks on the trot being normal. I'm lucky if i get 3 normal days on the trot. Why shouldn't I feel Ok looking after 4 kids.

The council didn't want to help because its a private property and also the fact that squatters had been in and it would cost too much to make entry safe.(they couldn't find the owner)

Hope you are having a good day.

Tess hope you feel a little better today. I've come to the conclusion that mild cloudy days are best for me cold hurts and no sun for me have to cover up. Had 2 bad nights on the trott so hope to have a good one tonight.

Di Linda Lindy and Ses hope you are all well.

Lizzy

anyway caught up on all ur posts.......

isnt there any scottish people in here lol

well.. not been up to much to be honest. still trying to do bits in the house that hasnt been done for so long..... but i get tired very easily but when i go to bed then i cant sleep.. aaaaaaggggggrrrrrrr restless legs and burning in them are the problem, hospital gave me some tablets to take for it but to be honest im sort of scared to take them as side affects is vomiting and nausea and thats what im just getting over with the slow realise morphine tabs i was on.. so think i will leave them be for a bit... the weather here is depressing now im up on my feet again i miss sitting in my garden with a wee glass of juice. john back to work now so things here are gettin back to some normality though i am missing him being here..... well i have a hobby to i do craft cards, like birthday/xmas ect... so im hoping to get back into it soon....

well i will leave u all to it.... remember im on msn if anyone wants to come on for a chat.. take care.. love to u all. .di xxx

Linda I really feel for you with the problems with your mum. We had similar problems with Stewart's mum but we were lucky that she wouldn't go out but always wanted us at her house at all times of the day. Did get carers in for her through social services who came in early in morning and last thing at night to help her out. If they came in any other time during the day had to be paid for by the family. Hope Social Services can sort something out for you or your health is going to get worse. :cry:

In the end it got too much for Stewart's family and there mum is now in a nursing home not far from Stewart's sister in Werrington, Peterborough.

When she lived at home on her own she was just five minutes ago round the corner so we had no travelling to do like you. Bless you things need to be sorted out soon so you can take sometime out for yourself.

Lizy know what you mean about cloudy mild weather. I sometimes find the hot sun too much. How do you cope with your lupus with fibro as well.

My daugther's friend has lupus and know how bad that can make you feel.

I think you do so well with all you have to contend with. :lol: When I saw the Rheum at my hospital was really good and understanding about the fibro. Only went twice but both times were really good and just gave mme some idea about how to deal with sleep and exercise. Also gave me a good booklet all about it. The Rheum said it could have been written for me when I told him about all the different symptoms was getting with fibro. :lol:

Di good to hear you are getting some normality back after your time of not being well. Maybe you feel up to making some cards etc. I think it is a good idea you are leaving your other tablets for now and letting things settle down a bit after coming off the morphine. Hope you continue to stay ok.

Richard and Brian hope you both have had a good day. Hope to see you both on again soon.

Di don't know what has happened to Ses and Lindy! Can't remember the last time they were both on.

Tess x x

You must insist that you get help for your mum, the social do have care packages in place in for such cases, my father inlaw is paralized from the neck down after an accident abroad (You may have seen our plight to get him home on TV) Since geting him back we have had to fight for everything, but it is there, just don't take no for an answer.

LizzyTess

I did ask for my doc to refer me online but he didn't know how the computer system worked, and to trying to log in for about 15 mins he gave it up as a bad job and refered me by letter. The orthepedic consultant I saw said that the rumi consultant was realy good and thorough so hopefully when I do finally get an appointment, they may diagnose me with something, at least I'll know what's wrong with me then, so I can look at some form of pain relief. I just feel rubbish today again, I've not gone into work.

With ref to the house next door, they can carry out works in default, that's where they carry out repairs and treatments to the said property and then apply a charge to it, so if and when the property is sold they can get their money back, this is practice in most Councils but as you can imagine it's never advertised and some only use it as a last resort. But they can do it. At least you'll know for next time, if there is a next time.

I think I've answered everything, this post is getting bigger ;-)

Oh I forgot how's the knitting going? :lol:

Speak soon Richard

I have never been offered any form of pain relief so I use my tens machine a lot and paracetamol. Not allowed ibuprofen.

Yes a charge was already against the house, its just that the council made it such a fight to ever get any work done on it. It went to court twice to be compulsary purchased and took two years to complete. It went for £65,000 and is now valued at £165,000. it now means we have a saleable property.

My Gp managed to get me refered twice to the endo department as he thought it didn't work the first time on the computer so did it again. So I got everything duplicated and I was in such a mess I couldn't work out what was going off. :oops: :? Its awful how your brain just doesn't want to function at times. The doc was really cross with me over it. :x It didn't help as I couldn't use the phone.(had panic attacks every time it rang or i had to make a call) I dread to think what my notes say. :lol: :lol: :lol:

Tess the two together is hard, the two have completly different treatments but a lot of the symptoms are identical so its really important that I get the right treatment for the problem. Thats why I'm paying to see a specialist as I need to understand what is happening to me and what i should be doing. It will be half an hour consultation so I should be able to learn lots about the two diseases and get lots of questions answered. Its not understanding what is happening to me which is causing me so much stress.

Di I think it would be a good idea to try and get back into your hobby especially if its something you really enjoy. I'm getting the knitting out tonight. I tried 3 months on no meds at the begining of this year as I got it into my head they were causing more side effects than good, I think it was good to give my body a rest, but it really didn't help matters.

Linda I'm sorry to hear you are having such a difficult time, I hope you get the help your mum needs at home sorted quickly. Even when you are well its dificult to cope with. Take care.

I send everybody a drink and chocolates as a treat.

Lizzy

Lizzy think it is a good idea you seeing a specialist to sort out the two conditions. Hope they can make things a bit easier for you. I a like you cant take ibruphen as I have acid relux and will irritate my stomach :cry:

cant take any antiinflamatory tablets for the athritis only use the creams that are not very good. Just take coproxomol or paracetomol for the pain.

Had some shoe inserts to help the tendons in my big toes but they never worked. Went back to see gp and he said as I was still to young :lol: wouldn't consider an operation on them yet. :cry: Luckily they have not been to bad recently. :cry:

Richard sorry you are not feeling great today and unable to go to work.

:cry: How old are your children? I have five children two boys and three girls. The eldest is Amy and she is 28. She has two little girls 11months and 5 years old. Got a Son Andrew who is 27, daughter Claire 24, twins Steph and Chris 21 this month.

Need to get an early night as looking after Sophie and Molly overnight on Saturday this weekend. Haven't done that for a long while so don't know how I shall get on. Probably have to have a good rest on the Sunday.

Also looking after my daughter Claire's house rabbit called Tinkerbell she is bringing her to my house. Should be an interesting weekend. Stewart is working though on his day shift now until Wednesday. At least he will be there overnight to help me with the girls.

Well have a good day everyone!

Tess

I can't use the ibuprofen creams as well I get a horrible weepy rash and like you i have acid reflux. We let our rabbits free downstairs one day to find that they had eaten through the tv arerial cable so they were banned. Have a good weekend with your grandchildren and house rabbit. I had a good night last night took an extra 25mg and it worked like a treat.

Richard I hope you managed to get to work today and that you are not in too much pain. Have you tried a tens machine I find mine does help.Its something you could wear to the office too. Would get them talking about you as i twitch everytime it shocks me. Looks like i have an affliction it makes the kids laugh. :lol: :D :D

Lizzy

Made a start on the knitting last night told the girls I was going to knit them all a scarf for xmas, as you can imagine it didn't go down too well, but they were all keen to have a go themselves so tonight I'm going to teach them all to knit. :wink:

Claire lets her rabbit tinkerbell out in her house. She had a brown leather look club chair in the corner and rabbit as been chewing all the back. She has covered all her wires so tinkerbell can't get to chew them.

Will only let her out in my kitchen then will be keeping an eye on her.

Won't let her into my lounge as got leather sofa's in there. :cry:

So you can't use any inflammatory things at all! Have you all girls lizzy!

I remember my mum teaching me to knit when I was young. None of my girls could pick it up and did try to teach them. Will be good to have the girls but Sophie has been waking with her teeth playing up lol :cry:

Think I am in for a noisy night. Now we have no children at home I shall be sleeping in what was the girls room with Molly and Sophie. Didn't want to disturb Stewart at work the next day at 7. Only get help from him if I am really desperate. :cry: He even suggested putting the bed up in the van if he didn't get any sleep lol. :cry:

What medication did you take 25mg of? When Stewart was on nights I took 20mg of ampytripline as the doctor said I could take 10 or 20. Did find it helped me sleep better but felt it took longer for me to feel livelier in the morning. :lol:

Hoping the knitting lessons go ok!

Tess

Am feeling a little better today, saw GP this morning and suggested, like you Tess, that I alter the amitriptylene to help the sleep pattern so will give it a try tonight He sat and listened for ages and as I expected thought I was feeling so awful due to all the driving, stress etc :!: We are very lucky with our GP I said I was sorry if I`d taken up too much of his time and he said he was just very sorry about my circumstances, and that there wasn`t a magic pill he could give me :!: So I have done nothing today, except some washing and prepare a meal, and am hoping I will be able to gradually get caught up. My Uncle rang to say he had spoken to Mum this morning and that it was like talking to a different person, she was very with it and like a `normal` old lady so that was some comfort.

Di, craft is my hobby too, and I know I`ve been bad just lately cause I`ve not looked at anything for weeks, it`s always the first thing to go :!: Hoping like you that I will be able to do something soon.

Enjoy your weekend, Tess, I bet you`ll be tired by Monday, but it will be a happy tired at least :!:

I wish we knew if Ses and Lindy were ok too, it seems ages since we heard from either of them.

Hope you get your claim sorted out Richard, I now have to put a claim in for Mum for Attendance Allowace, so more bits of paper for me to lose. Damn Fibro fog :!:

Linda

Glad you are feeling a bib better today. Hope increasing the ampytripline helps you get more sleep as well. :lol:

I do hope you find time to go your craft work and have some time to relax. :lol:

Think you could be right about me being tired on Monday. Try and not do too much on Sunday when the Molly and Sophie have gone home. Can't believe that Sophie will be a year old at the end of the month. It has gone so quick and Molly be 6 in December.

Got to go to Preston the weekend after and take Chris belongings over to his new house for his final year at Uni for the tv and film production course. He is then doing another year at Uni somewhere else to train as a teacher in primary school. Well have to go now as Claire will be dropping the rabbit off and all her food etc.

Tess

I upped the doselupin by 1 tablet last night just to get some proper sleep or else I get back into that awful circle of pain and the feeling of a spongey brain. Its the same as amitrip a trixy whatever. I have one spare pack that i keep for extras found I do it perhaps once a month when I have several bad nights on the trot.

Linda and Di I feel better already doing a little knitting ME TIME like the doc said, we just get carried away with every day life and forget to look after ourselves too. Linda I'm glad your doc had time to spend with you its important we feel that we have been listened too.Hope the tabs help and kick in quickly.

I have 3 girls and 1 boy I did try and teach then knitting many years ago didn't go too well from what I remember. My son was about 5 I remember he really enjoyed trying at the time, but now he won't even consider joining in.

At the moment my pain is about 3 on a scale of 1 to 10 ten being really bad. So I manage to live with it and on odd occasions take paracetamol when it gets me down. It never goes the pain its always there just in different places, and when its slightly worse I use the tens machine. This is one of the things I want to disscuss at my appt, as there are times when I do need something stronger.

Tess have a good time with your grandchildren and i hope you all get some sleep.

Got to go food is ready.

Lizzy

i always feel sorry for people who have to look after there parents it is emotionally and physically tiring..

richard..... if u went on long term sick.. do u get paid( by the way answered ur question on dla on the other page) i find it so hard for people who cant give up work, i had to because of fibro but after a fight with dla finally got it, but john does work full time(even though he has bad health) so i send u a big hug xx

lizzy, bet ur enjoying having some me time i think that is what is wrong with alot of people is they never have me time..

linda... i send u some hugs xx i never see u on msn... miss yaxx

tess, hope ur doing ok and not in to much pain

im on morphine patches u change them every 3 days. my painlevel was always about 9 out of 10 but at mo think it is about 7 so guess there working a wee bit....

hope u all have a lovely weekend xx

Good tto hear that your morphine patches are easing your pain a little.

Well got on overnight with Molly and Sophie and both were really good.

Put Sophie to bed at 6.30 her usual time and she stirred at 1.0 clock. Just gave her dummy and she went back to sleep straight away and woke again at 5. Didn't mind that time as normally awake then. Molly woke at 4 before Sophie and couldn't get back to sleep. She got into bed with me until Sophie woke up.

Both girls were very good and we all got up at 5. Didn't sleep to badly but kept waking as I could hear both girls moving about in their sleep. :cry:

Sophie and Molly were really interested in Tinkerbell the rabbit. Haven't dare let her out of her pen as worried she might chew the wood bench and wires in the kitchen. :cry:

Hope everyone else is doing ok today.!

Tess

Will have an early night tonight! Toes are quite painful today and really hurt.

Hope everyone else is doing ok!

Glad the girls slept most of the night, I use to love to stay at my grannies house overnight, when i woke early in the morning i use to get into bed with her and she use to tell me fairy tales with all the voices. My favourite was Little Red Riding Hood. :lol:

I hope your pain in your toes is easing.

I've had an awful day today I feel like death warmed up, my ears and throat hurt and I have had a heavy head all day. All I want to do is sleep. So I will be in bed early too. This happens far too often its a bit like the start of a really bad head cold that never comes.

Di I'm pleased to hear that your patches are begining to work. Yes you are quite right we all need time out for ourselves and when you have a busy family life that can be hard to do.

Linda I hope you are feeling better.

Richard I wish you a good week at work.

Take care all.

Lizzy

Tess, glad everything went well with Molly and Sophie, my two always had me up early :!: Like you though I`m always up anyway, so it wasn`t a problem. My toes have been worse than usual just lately, too, they must be getting ready for the cold weather

Lizzy I`ve caught the knitting bug :!: :!: Don`t worry Richard I don`t think it`s too infectious :lol: I always have something crafty on the go, but couldn`t get motivated with all that`s been happening, so needed something new and reading about your knitting prompted me to get started :!:

After I`d been to docs on Fri the lady from sensory services came to visit, she also did my carer`s assessment sometime ago. At that time she asked what I would most like to help me if I could have it and I said \"TIME\". We talked about the different ways I could gain some time for \"me time\" and the one thing I wanted most was to have the energy to do my housework as normal, so I didn`t feel guilty if I just sat and did craft stuff or read or whatever :!: What a surprise :!: :!: She gave me a cheque for £250 to spend on having someone come in and do the household tasks I find most difficult due to fibro and caring commitments :!: It`s called a carer`s grant and can be applied for every year, it has to be spent on what is decided when the assessment is carried out and you have to keep receipts to send in at the end of the year :!:

It`s made everything else not seem so bad to cope with and I`ve felt so much better since I`m not what you would call house proud, but it used to really get me down when I wasn`t able to do ordinary things like wash the kitchen floor or clean windows, so now I`m looking forward to getting caught up and enjoying \"me time\"

Hope everyone`s had a good weekend

Linda