OS ways and Poor Health

caronc

pollyanna_26 wrote: »

It is good to see that looking back you can now see some improvement in previous problems . I really support the daily diary method as it can chart ups and down and is very useful for hospitals and clinic visits and also benefit claims .

polly x

Absolutely when this all started I was encouraged initially to keep a daily "dizzy diary" and tbh I didn't hold much store in it but I was good and diligently did as asked. At my next appointment the consultant said he would take it away and read it (all 21 pages LOL) and again tbh I thought I was being fobbed off. However, a fortnight later I received a letter from the consultant saying he had read it and combined with other tests results he thought he knew what was wrong and could I phone him. Fast forward to a lot more tests and a diagnosis Meniere's Disease. He told me my diary knocked 6 months of them being able to be confident about this so in retrospect it was probably the best thing I could have done to help myself:D

pollyanna_26

Caronc Monday sounds like great fun , BGKs and you'll be fine .
Bless that consultant it sounds as though you will be in good hands .
Do rest as much as possible over the next few days x

Katkin Like yourself I'm a reader and a crafter , the latter isn't to the extent I normally do but come the sun and warmer days I'll get back into that .
I don't understand the first things about online games although they and her beloved Terry Pratchett kept her going over the years . One thing that fascinates me are the building of farms , houses etc that she used to do to relax . It did wonders for her knowledge of plants .
I would love to design a white weather board New England house but wouldn't know where to begin .

Cranky I love blackberries , the positive with todays rain it should have softened the ground for clearing . Ivy is a favourite of mine but it's a nightmare when neighbours don't keep it under control .
You're lucky to have that community centre to mix with like minded people any attempts to start something similar around here have fizzled out very quickly . They seemed to attract those who try the latest trend according to bbc series . To us it's a way of life but to them it's the latest fad and usually short lived .
I hope you got to rest this afternoon and the NW gets somr dry weather so you can sort your weeds and get the plants in xx

It's good to see you LynP . Glad to hear you're feeling much better .
I'm beginning to think Physios are the unsung heroes of the nhs .
There's been much positive feedback on this thread on the subject .
Drop in when you can . Are DS and family with you for long ? yet again the memory fails me but I seem to recall they were with you a while back . Hope you manage some peace and rest , I know you love the boys and family dearly but sometimes a bit of space is precious .

Take care all - here's to sunshine for us all
polly x

pollyanna_26

Missed your new post Caronc .
I'm glad the diary proved useful and shortened the period for proper diagnosis . Good for you and the NHS a win , win all round .
I thinking earlier about the "tip " situation someone talked about .
On reflection tips don't have to be gadgets etc although they are always welcome and I've been trying to think of useful ones to mention .
The daily diary is a tip in it's own right and as both myself and you have found does come in useful .
I find it interesting that a fair number of us are or were civil servants .
Maybe that's where the paperwork and record keeping comes in :rotfl::rotfl::rotfl:
I have for the past 10 years or so tried to help people make DWP claims and although there are always those who for reasons of mental or physical poor health have quite chaotic lives . I am always surprised at the large proportion of people leading functional everyday lives who cannot produce bank statements , details of outgoings , a list of diagnosed conditions or even the names of current medication .
I know the DWP has it's problems but some people fail to see they have to put some evidence into the process . I think some of the negativity around the outcomes of claims must be because of that .
I'm not sure anymore but advice used to keep 5 years bank statements . I'm old fashioned enough to bank on the high street and receive monthly paper statements . I'm currently condensing years of dds medical letters etc . we always have the list of current meds which the doctor prints regularly .
I'm rambling now so will leave you in peace .
Doctors in the morning then the dreaded shopping . Still haven't bought any flour so will put that at the head of the list in giant letters surrounded by asterisks .
Sleep tight
polly x

CurlyTop

pollyanna_26 wrote: »

I've been meaning to ask Curly Top how she is so if you are reading it would be nice to hear from you .

polly x

Hi everyone

I'm still here. Thank you for remembering me Polly. I've been quiet of late as I've had a stinking cold. First one in 3 years and only 2nd one in 10 years .... I always say 'benefits of having m.e. = no colds' weird how they stopped when I received this diagnosis. Then again, I may have very, very few colds but I get every other flaming inflammatory thing, oh dear.

MY disabled travel pass is being put to good use. Still not progressed PIP. Not given it a lot of thought to be honest ... distracted with sneezes, coughing and tissues etc.

My CBT appointments continue. I have 2 x 30 minute appointments left. They have concentrated on the 'doing the do' as I say, rather than talking about me. I don't mean that to sound vain because I am the least confident person you can meet and don't like talking about myself but..... I have not been asked anything about what may have brought me to this stage/ my life style/ history etc. I do believe that this in part, plays a big part when it comes to my pain and tiredness.

My family life has had its challenges which increased from when I was 15 and my mum got cancer, so I stepped up more to look after my brothers and sister. She passed away when I was 21 and my siblings were much younger. I have an autistic brother. My dad continued to work but his health took a knock when he was medically retired. He passed away nearly 9 years ago. All I know is getting on with it and being there for my family. I also recognise that this is one of the characteristics for my condition. Being there for everyone but myself until in the end, my body throws up a flag as a warning sign. Why it couldn't have broken my leg, heaven only knows, I always wanted to hobble on crutches to see what it was like : I'm weird, I know.

I know I have a condition but choose to act as though it's not there so plod on through the pain. Instead of taking rests and getting up and going back to things, I struggle on and pay the pain tax for longer. The common sense side of me knows I should stop and start but the other side of me just wants to get the flipping job done. I've been keeping diaries for 3 weeks. This week I've got to keep a diary of my tasks, how long I do them for and rate the pain level 0-10.

Pacing has been touched on, which I covered when I went for my initial course way back 11 years ago. What has been interesting to see, is that I do take rest between tasks, so some things I already do as a matter of course and have taken on board over the years, which I think has surprised the therapist but I must admit that I did take a little offence when she looked at the diary and told me I 'wasn't in chronic pain because your diary clearly shows you can do things that other people can't'. I let it go for a few minutes, whilst I 'reflected maturely' upon her comment. I then came back with ' I am amused you feel I am not in chronic pain - just because I do these tasks is not because I am not in pain, I am always in pain, it's just that I choose to do them, because to give in would mean I would be resting a lot of the time and I can be a stubborn thing, so I choose to work through the pain'. I think she got what I meant but I still wasn't pleased. I know that I am so fortunate in that I am not struggling as much as ladies and gents on here and different folk have different levels of pain, ability and disability but at the end of the day, the therapist is dealing with me. Its not a class discussion, its a 1-2-1, so I felt it was an unfair judgement. I don't know, maybe it's me being over sensitive but I'm a fairly open minded person and am always being told how bubbly I am so found her observation unusual to say the least.

Anyway, I have a week from from CBT this week. Session 5 next week. Onwards and upwards.

Big hugs to all. I may not post regularly but I email subscribe daily and like to see that we won't let the body gremlins beat us. xxx

snoozer

Grr, Curlytop. That reminds me of the registrar I saw when the consultant who told me that he was pretty sure he knew what my problem was died. He was a world renowned expert on the subject and when he examined me he found things I hadn't mentioned which he said were indicators of the problem. The registrar after he died said I couldn't possible have what he said because I "wasn't sick enough". Maybe not but it was insensitive and upsetting to say the least. She became obsessed by the fact that my BP was always very high when I saw her (I wonder why) to the extent that I asked her to discharge me and I haven't pursued a diagnosis since.

I've found that Dr's can't cope with migrating pains, they seem to expect that if your feet ache they will continue to ache constantly. At the moment my arms and hands are very painful, in two days time it could well be my feet or my thighs. One day I need to lie down because otherwise I will fall down and the next I'm able to walk a fair distance. Very mysterious and very frustrating.

I hope you don't mind me going on about it because I very rarely talk to anyone now about how I'm feeling and I'm feeling down because I'd had such a long period of remission that I'd begun to feel normal and now I'm going backwards rapidly again.

Does anyone here restrict their carb intake? I did the blood sugar diet last year and felt very well on it so I might try it again to see if it makes a difference again.

CurlyTop

Omg Snoozer, I fully understand the despair you must have felt. Your BP could just have been going up because of the white coat syndrome, where some people find it rises upon seeing doctors. A read later at the end of the appointment, could possibly have shown a different read altogether.

I fully understand Snoozer how you must be feeling. It's great when you are feeling upbeat but when you are feeling low, boy is it pants.

I don't restrict my sugar intake but I do follow a FODMAP way of eating because I have had IBS for over 20 years. The last 2 years, it has gotten worse and made mealtimes difficult. Its aimed at people with IBS as an elimination diet so that it could be followed and then foods reintroduced so you can see what triggers your symptoms. I found that there were that many things triggering it, it was easier to stay off food. I do miss bread a little and so this lunchtime, I've just bought myself a small white crispy baguette which I lavished with butter and chopped pork. Something that takes me back to my childhood but boy am I paying the price now. I feel as though my tummy has been blown up with a foot pump :rotfl: As a one off event, I'm more than willing to pay the price. After all , a little of what you fancy does you good and in the main I stick to the diet.

I think the thing I have found a little frustrating is that I feel like I'm going over old ground. I think I've gone into the sessions with an open mind, in the hope that maybe I've become complacent and could have identified something new, but that doesn't appear to be the case at all. I want to see this through because my gp has been good enough to refer me. I'm still hoping that the next two sessions may unearth something.

I openly admit to overdoing things but bar tying me to a chair, I'm not sure how else to stop myself doing things. I do rest, as I've mentioned before but when I start a job I just want to see it through to the end as soon as possible, so I can then rest up. The thought of stop and starting and stop and starting, to me is prolonging the job but this seems to be way that the therapist wants me to do things. I'm trying to give it a go but am finding it hard.

LameWolf

Caronc first and foremost, all the very best for Monday. It sounds perfectly horrid, but if it does you some good, then hang in there gal, and invest in some T£na pants (Mr LW swears by them, and always uses them if we attend the theatre or opera, because then he doesn't have to worry). Hmm.... I think I have the better deal on Monday: vestibular thingy vs a bouncy Staffie - it's a no-brainer, really.

katkin wrote: »

Thanks ladies for the RPG info, I totally get how much fun it can be from my sons who are geeky young men and like that kind of thing. I've never been much good with computer or any other games actually. Think being an only child may have something to do with that.

I too was an only child - but Mr LW and I don't do MMORPG games, these are games we just do on our own, just us two. I'm simply not sociable enough to play with a bunch of strangers online. Also, bear in mind that Mr LW and I first met at Dungeons & Dragons table-top gaming, which I discovered through Mensa. I also do crafts - knitting (when the paws allow), cross stitch, and card-making - currently part way through designing a birthday card for Mr LW's pal - who was also part of the D&D group, back in the day. He's just acquired a new car, in white, so I'm working on something with a Paladin and a white car (21st century "white charger").:D

snoozer wrote: »

I've found that Dr's can't cope with migrating pains, they seem to expect that if your feet ache they will continue to ache constantly. At the moment my arms and hands are very painful, in two days time it could well be my feet or my thighs. One day I need to lie down because otherwise I will fall down and the next I'm able to walk a fair distance. Very mysterious and very frustrating.

I hope you don't mind me going on about it because I very rarely talk to anyone now about how I'm feeling and I'm feeling down because I'd had such a long period of remission that I'd begun to feel normal and now I'm going backwards rapidly again.

*Nods understandingly re "migrating pains"*. It's one of the ways lupus keeps life interesting; you can't be 100% certain til you try to move in the mornings which bits are going to just be achey and which bits are going to be bluddy agony! :cool:
Anyways, you talk about it all you wish here - we all need to offload, and this is a safe place to do so.

Lynplatinum *waves* what ho, mate! Dunno if you've heard, but Mr LW and I have come out of CAMRA. The branch is back to effectively excluding me from meetings (no wheelchair access) and Mr LW dislikes going along without me, so we decided to save ourselves the £30-ish per year. :money:
Uh, oh, this is a l-o-n-g post,I shall shut up now.

Prinzessilein

Afternoon all!

Carnoc - have a restful weekend and all the best for Monday!

Mum and I have both had a rough couple of days...My skin has erupted yet again- and whilst I have a ready supply of skin meds ii os blooming painful when it happens - and uncomfortable...and I just feel so embarrassed because I can 'smell' the ooze and I just think everyone else can!....in all probability it is the stress of the PiPs along with the stress of having had visitors that brought it on...but knowing doesn't help settle it down!

As for Mum, she has restless leg syndrome - and for her it is restless 'body' not just legs...poor thing got hardly any sleep last night. The GP is not a great deal of help...he 'sympathises' but says there is not a lot he can actually do. ..at the moment they are looking to see if her meds might be causing or exacerbating it.

Just a reminisce on specialists.....I recall when I first went to see my GP and discussed the possibility of Autism with him...he said that I certainly had the classic symptoms and he referred me to a specialist....I had to wait but eventually got my appointment. The specialist said he thought Autism was the right diagnosis but he would like to do some blood tests to rule out a few diagnoses and then had another couple of sessions to confirm the initial diagnosis... eventually he said there was no doubt in his mind...he would write to my GP with the diagnosis and would I like a full copy for my own records...YES I would...a few weeks passed and no letter arrived for me, so I contacted my GP to see if he had had a letter...no, but he would chase things up...then I get a letter from the GP surgery a week or so later...expressing their deep apologies. The specialist had gone 'back home' to India!!!! No-one could trace him and he had taken his laptop with all his current notes on it! ...so there was no diagnosis for me...I had to start the whole process again! ...as it happens I moved shortly afterwards and had trouble even finding a specialist - but that's another story!

caronc

Evening all,
Thanks for all the good wishes for Monday I think I'll need them:eek:
I've been very lucky with Drs & Specialists although at first they couldn't give me a firm diagnosis but everyone was in agreement that I had vestibular problems due to an ear problem which was helpful, I don't I could have coped otherwise so my heart goes out those not listened to. My ENT consultant who is a very plain speaker told me he classifies patients as "Definite, Maybe, Benefit of the doubt and At-it" . At this I was quaking thinking he was going to send me away before he explained he had me in the "Definite" group- I didn't know whether to pleased or devastated

A lovely surprise today when my friends with pup brought her over to meet my elderly pooch. We are getting together at Easter so thought a "getting to know you" session would be a good idea. After a few initial grumbles and lots of bottom sniffing and tail wagging a good run about the garden was had before my pooch retreated. Needless to say he's been more or less out cold since then.......

caronc

A lovely morale boost today - fab gardener has transformed the allotment part of my garden into a much more user-friendly space for me! :DWorth every penny just need to decide what to plant now :cool: