Bad day/bad week(s)

[Badger]

Taking my whiskey medicine tonight and back to being sensible tomorrow, although it's already past midnight

 

[SBee]

The whiskey sounds a sensible enough solution to me @Badger .. Have you gone off track a bit yourself? Or is lack of sleep needing a helping glass or two?

 

[SBee]

Hiya @Auriel on but you send the most perfect huges out! So big I think I can feel them from here!! loads love back to you.

So nope, I am Still feeling under attack from the inflammatory arthritis and the osteoarthritis, and the fibromyalgia is having a riotous party inside me just to join in. I make light of it but it really is all out of control right now. Each symptom ( some overlap) are at their worse and it's affecting me badly.
I'm awaiting an appt to be set up with the rheumatologist, and have an appt Thurs to speak to a gp about the OA and in particula the fibromyalgia because so far no one medically speaking will speak to me about these conditions. Other than directing me to a website like Live Well With Pain!? Yeh, you try that I want to shout.. So I am not leaving the surgery until I have some actual plan out in place and the GP seems willing to interact.

But mentally I think I'm doing pretty good so that's something I hang on to! Let's take the small positives

How are you then? is it health issues or Life issues? Any news regarding moving to a better place that allows a needy animal to be adopted by yourself??

I can't figure how to send a massive hug like you so please accept some random emojis that make me think of you!

🌬

 

[JamieMarc]

@SBee
OMG
"Other than directing me to a website like Live Well With Pain!? Yeh, you try that I want to shout.. So I am not leaving the surgery until I have some actual plan out in place and the GP seems willing to interact."

What a slap in the face. How rude! That's like saying to a patient "Get over it!"

Bring some handcuffs so you can chain yourself to the place until you get what you deserve, and have as you said, an actual plan for healing.

 

[SBee]

Hey Gorgeous

@JamieMarc the worse of it is I actually visited the site as well...

But I have mostly just got ' it's all about lifestyle changes ' for advice and I have been concentrating on the arthritis side, just now it's so obvious the impact everything has on each other. Looking at others experiences this isn't an unusual a response As it sounds from GPs. Sadly.

As always I have some basic notes/pointers written for the new appt on Thursday. Will take my chains and handcuffs ( I did assume you would keep my personal life out of it haha ) . And am ensuring I come out with some medical support and a definite plan. It's just too much atm to carry on as it is.
Will update when I get somewhere. Look at me all Ms Determined

 

[sunkacola]

But I have mostly just got ' it's all about lifestyle changes ' for advice

The thing about this is.....lifestyle changes to healthier ones IS important, in fact it's vital for those of us with fibromyalgia.
AND what is also true is that a person can make all of the lifestyle changes in the world and do all of the right things and they will still have fibromyalgia!

It's very hurtful to people when doctors say to them something like "it's all about lifestyle changes", because a newcomer to fibro will think, as I did, that if they just do everything right they won't really have fibro any more. And while I can attest that many people can ameliorate their symptoms significantly by finding out what things they can do for themselves that will help, none of those things will cure. And then a person, who has worked so hard to get better, can get terribly discouraged.

I've been through that discouragement, and out the other end of it to acceptance that my life simply is not and most likely never will be what it used to be, that my favorite activity in the world is no longer something I can ever do, and that I am basically disabled. It stinks, but that's the reality. I still do my best to do all the healthy living things, eating well and so on, of course. But I mostly focus on grabbing every tiny little bit of joy that comes my way, and the rest of the time being grateful for what I do have and distracting myself from the really hard things like serious pain and fatigue. Seriously, I have come to believe that, once you have learned to practice healthy activity and eating and so on, finding good (healthy) distractions is very important and is a completely valid approach when you have a chronic condition.

Recently my soul-mate dog has been seriously ill and I thought I would lose him. It was a terribly hard time for him and for me, and for almost a month I was in a constant state of high anxiety and fear. He's better now, and the prognosis is very good, and I am immensely grateful that I was able to get him good veterinary care and he will be OK. ....(Although my finances will not be, for a very long time!)

I am, of course, left with the physical result of having spent so much time under great stress, and am more exhausted and in more pain by far than usual. That's hard, especially not knowing how long it will go on, but I focus my attention on my beloved dog and how lucky and happy I am still to have him here with me, and feeling himself again.

"Live well with pain"? That almost sounds like an insult to me. Sure, you can live well even if you are in pain. It can be done. But it's just not that easy, and it's not something that everyone can accomplish, or that anyone can do every day.

 

[Auriel]

Thanks @SBee (Emojis really pretty, feel like I got sent lots of present's ) had quite a bad time (fibro) eased a bit few days a go (started up again now, not as bad as days ago though?) Yes I've had some moving news (I'm higher on the list now) Wow 3 thing's going on the sane time!, so good you keep your mental health in check (chronic pain condition's can make people go under sometime's) yeah the dr's don't really know what to say about fibro (they just don't know what to do bar give us meds) ok, take care (hope you have some kind of repreave soon)

 

[SBee]

@sunkacola firstly I am sorry that both you and one of your beloved dogs have been through so much pain and anxiety together. That depth of fear can be so overwhelming. And we all know that mental/emotional anguish always has an impact on our physical health too, and vice versa. I hope that both you and he slowly heal together.

It is indeed almost unbearable to follow the medical advice of lifestyle changes,to adapt your life,to slow your life to almost halt your life and yet still find ourselves in daily pain, and for many of us, chronic ( and at times total ) exhaustion.

Although I accept that I will never be the person I was prior to fibromyalgia ( and other conditions ) I still need to find all the ways to be the best I can in my life. Sometimes, as of lately, the physical symptoms are so high, and even more debilitating In have needed to ' step back ' to almost let them run their course before being able to pick myself up and challenge the medical professionals to give As much as to me as I try to do for myself.

Too many of us ( All of us? ) find ourselves in a position where a lot of the medical profession don't know what to do with people with fibromyalgia... So seemingly leave us to our own devices.

Lifestyle changes can play their part in overall health, to anyone's life, and when I was directed to that particular site, early in my diagnosis I felt initially optimistic. I did indeed think if I acted accordingly the fibro would ease. Until the relentless reality of living with fibromyalgia did not, as you say go away. I think it was a well meaning offer from a dr who clearly ( and understandably ) has no concept of living with chronic pain. So now, I do find that kind of false hope rather insulting.

I prefer to hear a more honest realistic approach to living with fibro and it's symptoms. I hope the general medical professions begins to grasp a better concept and understanding of illnesses such as this. And of course the impact of has on us all.

 

[SBee]

@Auriel that's exciting news move wise. I send good thoughts your way in hoping this works out for you soon. Mental stresses always add to physical affects. Just stay being kind to yourself and as much as you can, listen and give your body what it needs at this time when the symptoms have kicked up worse.

I am hoping this GP will talk with me and not at me if you know what I mean ? I'm on a bucket full of drugs for various stuff atm moment so any more added in worries me. I need some coherence with the multiple chronic conditions and their effect on one another. Fibro does seem to latch into me more when other symptoms are high. Take care of yourself too

 

[Badger]

Have you gone off track a bit yourself

Yes unfortunately and more difficulty sleeping than usual. I've also managed to strain my calf muscles, achilles tendons and left hip. Taking it very slowly and hoping to stick with lifestyle changes for a couple of weeks. Perhaps then I'll have a tipple on my 45th.

@SBee you have the right idea in preparing for the doctors appointment. It's great to hear of your positive, philosophical attitude despite all the discomfort you have.

@Auriel I'm glad to hear that there has been some progress for you on the move.

 

[JamieMarc]

And while I can attest that many people can ameliorate their symptoms significantly by finding out what things they can do for themselves that will help, none of those things will cure. And then a person, who has worked so hard to get better, can get terribly discouraged.

I've been through that discouragement, and out the other end of it to acceptance that my life simply is not and most likely never will be what it used to be

I've been through that discouragement as well, @sunkacola And while I have had some improvement through lifestyle changes (most additions), I remain discouraged, but also determined.


Also, I am sorry for what you had to go through when you beloved dog was sick. Because I never want to be put in that position (one so many friends I have had to go through, like you) of choosing between my "dog soulmate" and money, I pay quarterly for pet insurance. It is a burden financially, but it's worth the peace of mind I get, especially when I have known so many who had (to their minds) to opt to allow their pet to go without care and, sadly, pass. So I'm also sorry for your financial bind but, as you said yourself, no amount of money would deter you from providing him/her care.

Be well, and sending you love and hugs.

 

[JamieMarc]

Looking forward to hearing about your appointment, @SBee We'll chat soon!

 

[Sueb24]

Sound like a very productive appt @Sueb24 ,

so encouraging to have a medical professional to not only engage with you, but then ton then provide relevant further testing. Makes a world of difference.
There may be a bit of a wait for the further tests but at least they are on their way. Sounds like a great productive appt.!

Encouraging yes Sarah but of course there is always the point made that exercise is so important. Tai Chi + physio has now been suggested. Still, it is reassuring to have someone listen & make suggestions.

 

[Sueb24]

@Sueb24 good, I'm glad to hear it, that's more like it, we hope for someone thorough. Hopefully they can be of some help in the near future.

Exactly Badger. She also said to ‘be kind to myself’ because I’d been through a lot in the last 18 months. No medical person has EVER said that to me previously.

 

[SBee]

Hey @Badger sorry the leg injuries have worsened. You are doing what you can I guess, working slowly and hopefully build up. Sometimes I feel the need to almost stop much of the usual exercise, such as it is, to let the body rest and heal. The difficulty is always doing that enough to benefit without falling into lack of motivation and/or doing so little we risk aggregating other symptoms. Balance thing again.

But, that whiskey ( correct spelling with the ' e ' in my book ) will be waiting for you. 45? Young whippersnapper!