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Smile

Posted , 7 users are following.

loxie
loxie

My partner pointed to this that he spotted online the other day and said cheerfully 'oh, this is definitely you' - gee thanks smile

 

6 likes, 70 replies

70 Replies

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  • Meg53
    Meg53 loxie

    Posted

    Very good, welcome to our world! - LOL

    I still have a reasonable memory but I also get the occasional mental block where I can"t remember a word or name, or why I went upstairs; very odd as it comes and gos?

    • kaz_40
      kaz_40 Meg53

      Posted

      well meg you will laugh at me I got up went to get dressed, put pants on, went to go downstairs with nothing else onrolleyes??? Postman would of had a shock if Id of answeared the door to him with just knickers on. My brain isnt working great at all,as you can tell. But doing this and not realisising till startted to go downstairs no hope for me. how are you hope your not in too much pain take care gentle hugs xx
    • loxie
      loxie kaz_40

      Posted

      On the subject of memory and brain fog etc.  I have an appointment tomorrow with the neurologist.  I was referred by my GP ages ago, been waiting a while for the appointment and I cant for the life of me remember much about the discussion I had with the GP at the time or what it was I said that made her think referring me to the neurologist was the next step.  I do recall she originally thought I needed the 'memory clinic' but I was at pains to point out that I don't have dementia or Alzheimers, I have 'fog' where my mind just overloads.  I'm struggling to know what would be best to say to the neurologist to make sure I get my point across and get listened to in the brief appointment slot.  Any help or ideas would be very welcome folks.  Thanks
    • kaz_40
      kaz_40 loxie

      Posted

      Hi Loxie My gp refered me to the memory clinic last year as my memory was sooo bad. she wanted to rule out alzheimers and dementia. The lady I saw had me doing different tests. at the end of it she said In the last 8 weeks Ive seen 8 people all ofwhome have fibro and have the same problem. going to the memory clinic is to rule out alzheimers and dementia thats why your gp probably mentioned seeing one to you. I saw a neurologist years back had yet more tests done said tests have come back normal sorry cant help you. What I would do is see what he says to you first, then go from their and explain fibro fog as best you can. But thats what I would do see what he said 1st. write down on a piece paper take with you what fibro fog is like and how it affects you.hope all goes well with appointment let us know how it goes. take care gentle hugs xx
    • loxie
      loxie kaz_40

      Posted

      Thanks so much Kaz for your helpful comments.  I'll spend some time tonight writing stuff down so I don't forget anything.  I'm pretty convinced that my mental blocks are mostly due to the overwhelming fatigue I get, which makes it difficult to give energy to thinking straight.  Oh well, at least I'm getting to see someone and 'every little helps' as they say.
    • kaz_40
      kaz_40 loxie

      Posted

      Hi Loxie Hope you get on ok tomorrow, let me know how it goes. Im not sleeping at all, cant remember last decent sleep I had. I am going to speak to my gp couldnt believe what I did this morning.I went to get dressed put my knickers on walked out the bedroom went to go downstairs with nothing on but my knickers????? I suddenly realized thats all I had on went back to get fully dressed. It really did upset me Im sure no sleep isnt helping so going to get in touch with gp. I dont know what Im doing half the timerolleyes to top it all a neighbour came round yesterday I kept coming out with the wrong words all she did was laugh poke fun of me. My husband went beserk when I told him. I hate fibro with a passion. take care hun dont forget to write stuff down gentle hugs xx
    • Meg53
      Meg53 kaz_40

      Posted

      Hi Kaz, not sure whether to laugh or cry over the unpants caper but I know where you are coming from, we really do some loopy things from time to time. Lack of sleep is such a crippling condition. Last week I went three night with really bad sleep and it is almost like you get too overtired to sleep. 

      Talking to your doctor sounds like an wonderful idea, in this  age of  modern medicine you should not be suffering like this. Hope you get some sleep soon. xxx

    • Meg53
      Meg53 kaz_40

      Posted

      Your neighbour doesn't sound very nice, isn't great our partners are so supportive. xxx
    • christine26761
      christine26761 kaz_40

      Posted

      O' poor you Kaz..really feeling for you..just encourage yourself in with the knowledge that it will pass..and that your neighbours can't do what you can do..lol..your unique ...be blessed Kaz..have a lovely day...:-) xxx
    • christine26761
      christine26761 loxie

      Posted

      Hi Loxie, try not be worried about it....it will only exasperate  it..the Neuro that I seen couldn't find anything..he rung my consultant...it was decided it was just...Fibro Fog....shouldn't say just, Fibro fog..it's hirrid for us....that was years ago now..but I pas sooo stressed out waiting to see him! my mind had me dying of a brain tumour...it's that long wait before we see the Neuro..I was very worried when I was referred..it was from a GP..guess he didn't know too much about Fibro..be blessed Loxie..im sure you will be ok..be blessed..have a lovel day..:-) xxxx
    • loxie
      loxie christine26761

      Posted

      Thanks all for your kind words.  I'm not stressed about actually seeing hte neurologist, I'm just grateful I've got a referral at all - it's hard work with my GP's getting them to listen or do anything except prescribe yet another useless pill.  Getting referring to a hospital clinic is at least a step forward.  Just stressing about how I get my point across; I've found the minute you start talking, they latch onto the first thing you say and switch off, not listening to the rest.  If the first thing I mentioned for example was forgetfulness, it'd be 'your age', or say stomach issues, then IBS gets written down.  I know all this - what I need them to do is listen COMPLETELY and form an opinion based on a wholistic approach, not get impatient and write me off after one sentence.  The hopeless NHS system of only allotting such a short appointment time means they don't actually have time to listen to the whole story as their mind is generally on the next 500 patients sitting in the waiting room (that is, if there anywhere enough chairs!) oh to be rich and afford private care smile
    • kaz_40
      kaz_40 Meg53

      Posted

      Hi Meg How are you doing hun? I managed 2hrs sleep last night thats good for me as up to last night I havnt slept for weeks. It really did upset me when I suddenly realized I was going down stairs in just my knickers nothing else. good job I did realize just imagine if Id of opened the door to the postman like that , he would of passed out with shock hes only a young lad. Its upsetting when the right words dont come out your made fun of, my husband wasnt impressed he cant stand the neighbour in question. Shes not nice her job is a social worker when shes at work, she has no people skills at all. Hope you have a lovely day and weekend take care gentle hugs xxsmile
    • christine26761
      christine26761 loxie

      Posted

      It would be good if you were abke to get a double appointment..I would write everything down if. I was you...including what you just wrote to me...(what they think things are by your first sentence ). They know hiw much time they don't have..they may just appreciate it...grrrr...just drives you crazy...many people on here get told it's just all in their heads before diagnosis..and then the Drs  wonder why most Fibro sufferers end up with deoression  too...hooe things go well fir you sadie..really hooe you get a Neuro that listens...be blessed:-) 
    • kaz_40
      kaz_40 loxie

      Posted

      write everything down that you want tosay make sure you take it with you just be firm forthright make him or her listen be firm. wish I could afford private health care too. hope all goes well today for you take care thinking of you.smile
    • kaz_40
      kaz_40 Meg53

      Posted

      Hi meg my husband is very supportive he doesnt like it if some one up sets me, he got really angry when I told him about neighbour poking fun of me and laughing at me. shes a social worker and should no better on how to treat people. mind you shes been in hospital malnurished and dehydrated through being to idol to cook for herself. not good when your a social worker looking after vunerable people. hope you have a good day today and a lovely weekend x
    • Meg53
      Meg53 kaz_40

      Posted

      Thanks Kaz hope you have a really good weekend, relax and have some fun with your partner and get some more sleep?

      Isn't it funny how some of these health and social care professionals can become so hard and seem uncaring, my sister has been nursing all her life and I find her attitude quite flippant, it is almost like they are past caring. I am not saying all are like that, I have met many lovely caring people in these spheres, it is just some of them.

      Sweet dreams, Megxxx

    • Meg53
      Meg53 kaz_40

      Posted

      Your husband sounds lovely.xxx
    • kaz_40
      kaz_40 Meg53

      Posted

      Hi Meg53  and christine My husband is golden theirs nothing he wouldnt do for me, he backs me to the hilt on everything and wount have any one hurt upset me. Im very lucky to have him, and love him very much. Hope you both have a lovely day today and a good weekend. take care both gentle hugs xxsmile
    • christine26761
      christine26761 kaz_40

      Posted

      Wonderful Kaz ..it's very reassuring when theirs a good hubby on hand

      for sure, mine's the same, I'm just soooo grateful too...many are nit soo good, I really feel sorry for them having to handke such health issues alone..

      had a lovely day inside still resting up today....getting ready for our biggy tomorrow..our usual...stay well Kaz, be blessed, enjoy your weekend..it's just past  7.30pm here...watching a great movie...hubby thinks I'm missing it cause I'm on here..lol..doesn't get it that women can do lots of things at once...lol...:-) xxxx

    • kaz_40
      kaz_40 christine26761

      Posted

      lol tell hubby women are very good at multi tasking we are starting the bathroom after lunch. weve just been picked a new bed. Weve got a very buisy weekend. its sunshinning here 12.05 lunch time. we are certainly lucky to have such good husbands. I feel for any one whos alone with fibro and also those that have children, my heart goes out to them. as copeing with fibro is not easy. Hope you have a lovely day tomorrow christine hope you sleep well. gentle hugs xxxsmile
    • kaz_40
      kaz_40 Meg53

      Posted

      Hi Meg I have met some lovely caring people in our health services, but Ive also met some, that shouldnt be in the health services because their attitude and how they speak treat people is all wrong. The last specialist I saw it wasnt anything fibro related was soooo lovely kind he really cared about his patients, that shone through from him. pity they wernt all like him some of them think they are god and should be bowed down too. Ive several in their places before now because of their attitudes, I dont bow down to any one Im afraid.I take no nonsense off any one. hope your not in too much pain hun. hope you have a lovely weekend take care big hug coming to you x
    • christine26761
      christine26761 kaz_40

      Posted

      Wow!! Stating on your bathroom, don't do too much, probably over by now.. be the cuppa tea lady..that's what I do, and always saying: gee you've done a great job there...lovely new bed too...onward and upward hey Kaz..be blessed have a really lovely day..it seems soooo strange talking to someone who has commented 12 hours ago...We are just off to church and then out to lunch..feeling good keeping positive too...very important..pace yourself beautiful lady...be blessed :-) xxx. It's 9.20am here..looking like a nice day outside too..
    • kaz_40
      kaz_40 christine26761

      Posted

      good morning christinesmile Hope you have a lovely day, and a lovely lunch out. Its sunshinning here its 10.35am. Bathroom is coming on nicely hubby has done the glossing, hes starting the walls later. We are going to look for some new towels and accessories for the bathroom. and have a coffee out some where. Hubby doing the painting Im doing cups of tea making sure hes kept fed watered. well hun I will go hubby ready to go out. take care gentle hugs xxsmile
    • christine26761
      christine26761 kaz_40

      Posted

      Had a lovely day thanks Kaz, we went out with friends for lunch to the "Hogs Breath Cafe" do you have them in the UK..?  Your bathroom sounds like it's coming on nicely...it gives us a good opportunity to buy new things that match the room, when decorating ..good fun...

      yes I keep Tony fed and watered too when he is painting etc...enjoy the rest of your weekend..it's 9.15pm here, I'm just watching Peter Allan-The Boy Next Door..,movie, .how talented  and sad too...be blessed Kaz..enjoy your days while the pain etc...us not as bad as it gets sometimes.....:-) xxx

    • kaz_40
      kaz_40 christine26761

      Posted

      Hi Christine I dont think we do have hogs breath ok in the uk hun. we had a spot of lunch in an antique centre cafe, we had a look around but nothing caught our eye. Just got back home we are carrying on with emulsioning the walls now. hope you sleep well and your enjoy your movie gentle hugs kaz xxxxwink
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