Just needed to be heard for a little while

Waves_and_Smiles

In my case unless someone mentions one of my triggers (religion and death), I don't think anything anyone says would upset me, the fact someone has cared enough to reply/ thank a post is what counts to me. It is all about being heard and accepted as I am, gentle encouragement is also wonderful but mainly if people don't run away screaming that is what is important, even more so sometimes than the context of the reply. A simple "thinking of you" is sometimes all I need.

Oh, and don't worry about saying something daft, it happens to the best of us. I have looked back at some of my replies to people on here and have cringed. Daft is fine with me, I know it is meant well and again it is all about the validation and acknowledgement.

Errata

Waves_and_Smiles wrote: »

Now the endocrinologist...Anyone ever had a bone marrow aspiration? Eeeeeeek! .

My brother has had several recently, he has leukaemia. He gets a local anesthetic, sedation and analgesia. But that's just him, I guess it could be different for other people.
HTH

Waves_and_Smiles

Thank you, Errata and I am sorry to hear about your brother, I wish him well. If they give me the same then hopefully it shouldn't be too horrific, that is reassuring. They don't believe mine is Leukaemia because I have had this for over 6 years now, with the blood count gradually increasing and I would have a lot more symptoms or worse by now with it being untreated. My consultants main concern is while my body is under the impression that it is fighting an infection it is putting all of its energy into that which is likely why I tire so easily and nothing else will stabilise.

I have taken so many different antibiotic courses over the years to try to wipe out an undiagnosed infection and nothing has changed, in fact there are even more white blood cells. It's a bit of mystery but there are autoimmune disorders that can cause it, it is just a question of having a proper look at my bone marrow.

oystercatcher

elsien wrote: »

General question to throw out there for people to comment or ignore as they wish.

Many of the issues people are dealing with are outside of my experience. So I often can't offer much in the way of empathy or constructive suggestions, and I don't want to put my foot in it by saying something really crass. But neither do I want to ignore or hide from people, e who may be looking for a bit of support.

So without making it too personal, and I realise people may have different coping strategies, what is useful from the people around you when there is a bit of a blip going on? People who aren't your nearest and dearest, but who might want to offer an ear or a helping hand.

It helps to know someone cares .
Personally I hate it when people say things like " Oh, you'll be fine" , or " It will never happen" when I know for a fact that there is a chance that everything will go horribly wrong. Logical sense of " It won't happen because ...." is OK but not trite generalisations (which haven't happened on this thread I must add, I am talking 'real life' now) .
I think it just helps to know people are thinking and hoping all is well so I try to do that for people. (Although my mother always says she is praying for me and I 'hate' that for other reasons !)

oystercatcher

eek, I missed a load while I was thinking and posting.

Am glad you are home safe and sound WaS . I often need to sleep after big trips or appoinments, the vertigo uses huge amounts of brain power and sleep is a way to reset everything back to where it was (no such thing as normal for me.)

I have assisted with bone marrow biopsies when I was nursing a long time ago. They always used local anaesthetic and it didn't seem too bad for the patients. On a par with having a tooth out if that makes sense? If it means they can work out what is causing some of your problems it's got to be worth a try . I'm sure they will let Sir P and your blanket attend.

I have a small monkey called Matilda who comes to many places with me, she has that bean filling and is lovely to hold and fiddle with when stressed. She came to hospital when I had my ear operation and I even held her in the operation theatre when I had my cataract operations this year. I just asked politely if I could bring my 'stress relieving monkey' with me and they agreed she makes the staff smile, I don't care if they think I am childish, if it helps and is harmless why not is my theory !

Waves_and_Smiles

Thank you oyster, believe it or not I was worried that they wouldn't let me cling to Sir P. It is apparently quite quick and if it is just like having a tooth out in pain terms I can cope with that. Of course, Doctor Google has horror stories, I really shouldn't read it before I have treatment. I am breathing a sigh of relief now! I had Sir P with me all day today, the endocrinologist always grins and my psychiatrist pats him on the head! They are quite used to me turning up with him and don't usually bat an eyelid. The neurologist is brand new so may look at me oddly but I really don't care, where I go so does Sir P!

I was so tried coming home that I fell asleep in the car which is unheard of, I am usually cowering and having a panic attack! I do feel better after a sleep, though and that is 3/5 appointments out of the way. The neurologist is next week so I have some time off now.

Errata

Thanks WAS, that's very kind of you. I hope the test points to the source of your problems and they can be dealt with.

oldestgnome

elsien wrote: »

Not really, I was just thinking there must be a lot of me's out there in the real world. Interested, not scared of the misconceptions, just a bit clueless and worried about making things worse if we do say something daft. So I thought I'd ask in case anyone else following the thread is wondering similar things.

Thanks Elsien because I fall into that category!

Glad to see you have got to 3 of your 5 appointments WaS

((LiR)) it's a difficult decision, with an understanding and helpful vet have lots of big dog cuddles.

Oystercatcher would you mind if Matilda became a thread mascot she sounds like a lovely companion?

MU - see below for a list of coping tips and distractions I found here in white below: http://www.thesite.org/mental-health/self-harm/self-harmcoping-tips-and-distractions-5696.html


Alternative therapies: massage, reiki, meditation, acupuncture, aromatherapy
Bake or cook something tasty
Clean (and won’t your folks/housemates be pleased!)
Craftwork: make things, draw or paint
Dance your socks off
Eat sweets or chocolate for an instant sugar rush (but be careful of the dip in your mood once it’s over)
Exercise for a release of endorphins and that feel-good factor
Forward planning – concentrate on something in the future, like a holiday
Go for a walk (preferably further than the local pub)
Go online and look at websites that offer you advice and information
Hang out with friends and family
Have a bubble bath with lots of bath bombs fizzing around you
Have a good cry
Hug a soft toy
Invite a friend round
Join a gym or a club
Knit (it’s not just for old people you know)
Listen to music
Moisturise
Music: singing, playing instruments, listening to (basically making as much noise as you can)
Open up to a friend or family member about how you are feeling
Pop bubble wrap
Phone a helpline or a friend
Play computer games
Play with a stress ball or make one yourself
Read a book
Rip up a phone directory (does anyone actually use them these days?)
Scream into an empty room
Shop ’til you drop
Smoke – smokers find that having a fag can help (smoking is not a long term solution; in fact, it’s a form of self harm)
Spend time with babies (when they’re in a good mood)
Tell or listen to jokes
Use the internet
Visit a zoo or a farm (animals do the best things)
Volunteer for an organisation (will make you feel all warm inside)
Watch TV or films – particularly comedies
Write: diary, poems, a book
Write negative feelings on paper, then rip them up
Yoga: meditation, deep breathing – this might help you relax and control your urges
Zzz – get a good night’s sleep


End

System

thank you oldestgnome, i'm going to try some of those

elsien, for me virtual hugs are good, i know not everyone is huggy but they make me feel warm and fuzzy and not so alone

System

Errata wrote: »

My brother has had several recently, he has leukaemia. He gets a local anesthetic, sedation and analgesia. But that's just him, I guess it could be different for other people.
HTH

Sorry to hear that Errata, wishing him the best. And hope you're taking care of yourself too