Isolation... from a rookie

[Kati]

I wanted to share my thoughts as the year ends, it's been a bad one for me, the first one of my illness and finally get to see a specialist next week to figure out what I've got- (so far, it's a self diagnosis)

As my health declines over the months, as the photosensitivity prevented me to see the summer, as the headaches are pounding as I talk, I have gradually resigned myself to stay home, and have isolated myself a bit more each day, week, months.

I rarely phone out anymore, since it's gives me a hedache and in the same time my friends stopped calling. And beside, I haven't got news, other than aches, pains, and new symptoms. One old friend is actually scared to visit because it might be "catchy". (she is actually a nurse) What do you say to that-

I think this is the most depressing part of my illness- and it feels endless. It is accompanied by the lack of understanding from doctors and people from work and people that think I should get off my butt and go back to work.


ETA: And then what happen if you want to get out of the isolation but you only exacerbate the symptoms, then you don't try anymore in FEAR of getting into a crash?

My question to you is how do you cope as the months go by and as the illness does its hurts, with the lack of social contacts?

 

[Jody]

Hi Kati,

We've all been a rookie at some point.

In some ways that is the hardest phase, as we try to figure out how to manage in this new difficult life.

Here are some of the things that help me.

Being able to be on the net is an enormous help. This time last year I had no computer and the isolation was deadening. I am lucky enough to have family here with me, my husband and kids. But beyond that, really there was no social life or feeling of community.

Got a computer in April. And got connected to some places online.

My social life takes place here and on Facebook. I have a few friends that I email. I do a little freelancing now (was too ill a year ago) and so my work relationships, the few that I have, are online too.

It is a different world, the cfs world. But if you can make some peace with it -- just for now. Don't try to look years ahead, it will freak you out. You don't know what the future holds. But then, that also goes for the good that may possibly come. You are not necessarily going to be sick for years.

The symptoms you have now may decrease. Mine have. I can't guarantee this will be the case for you. But it might.

I recommend not trying to look too far ahead. Take life in smaller pieces. Today. Tomorrow. If there are connections you can make online, do so. Virtual friendships are still real friendships. They make a huge difference for me. They may make a difference for you.

That's all I got for now. If other things occur to me, I'll come back to your thread and share them with you.

 

[KC22]

Hi Kati,

By far the first year was the hardest, the not knowing and then wondering what is happening to you.

I felt like I was having growing pains for the first two years. I used to describe it as "ouch,ouch," but I have come to realize that was my awakening.

Jodi gave you a good idea with coming to the internet and developing friends here or where ever you like to go.

If you have any interests, google it, and see if there is some connection there. I found Eckhart Tolle TV and they have wonderful blogs going on that I enjoy reading.

Do you like to write??? I have written 1 1/2 children's books. I am working on the second one. I only start writing when I feel motivated and not so tired.

The other thing I found helpful is youtube and then find artists you enjoy listening to. I can get lost for hours there.

Try not to worry about what others are saying. It is draining and it won't give you anything. You need all the energy you can find.

We have hope this year with the XMRV finding and the research that is happening. This is new for all of us and it gives us all hope.. I agree with Jodi, don't look too far into the future.. One day at a time... If you are having a good day, do something like read or listen to music. If not, just go with it. Curl up in bed and find some good movies. You can't change what's happening to you at least for now.

Sending you positive thoughts.

 

[Kati]

Thanks Jody and KC

KC my recent passion is (was ) photography- I was going to college part time before and in the earlier days of my illness. Nowadays, I have become weaker, and the camera is heavy and I have joint pain, particularily in the wrists.

In the last few months I learnt how to crochet, which is slowing down quite a bit because of the pain in the wrists and fingers. I can do a ifew minutes at a time. Started this granny square afghan, which will be finished whenever it will be, no rush.

Writing, I used to like it, had my own blog, and also wrote travel journals as I travelled cross country, east west, north south across the continent. I LOVED it. I would think all day about what I'd say, what I saw, who I talked to. My recent blogging was about the early illness stuff, and my photography. That is until my workplace took photocopies of my blog and photowebsite and accused me of running a photography business while off sick from work. Talk about a turn off for writing and sharing it.

I am usually more creative when I am on the road somewhere, more time to think, etc.

This is definitly a different journey, and while I am somehow adapting the best I can, other days like today, the task at hand seems out of reach. I have been bored, I feel fat (gained lots of weight) and isolated. The stress I get is from disability insurance (they want me to start rehab and back to work!) and the HOPE I have found a good specialist (appointment next week) and a diagnosis with the HOPE of a treatment. Of course the financial aspect is a worry especially if I have to cover the lab costs to the US or pay a visit to Dr Hyde or some other specialist.

Does isolation mean depression?
How does one continue to grow as a human being being isolated?

 

[Marylib]

Kati

Hey Kati,

Well, it is an adjustment! This from an extravert by nature, who loved nothing more than hanging out with friends and talking talking talking.

Some of the friends do hang on...a very few, but they are gems -- at least such was the case for me.

It is funny...when I got the flu that brought on my big crash (after 12 years of ill health but still could exercise and think better in those days) I was in San Fran looking after my sis in law for a cancer surgery she had. I discovered then that there was this whole cancer survivor subculture (most of the ones I met have had multiple cancers and are still kicking for some reason). I thought "Gee I would never have known this subculture existed." One of the people I met is a dear friend now -- never woulda met her otherwise.

I agree -- online socializing can be a Godsend for ME/CFS'ers who are well enough to handle it.. It takes time to adjust -- but maybe you will get well real soon and be bopping around again!

Another thing -- you kind of stop missing the socializing once it becomes associated with feeling ill. A Pavlovian response. This sounds depressing I know but I think of it differently, because lamenting has its limits!

Less socializing brings out other beauties in life. Going slow brings out heretofore undiscovered treasures...You can really get into one bird outside your window and find yourself inexplicably filled with joy. You can relate to another person with disabilites that you would never have given 2 minutes to before ME/CFS. And that person might have a wicked sense of humor...

Now I know we would all go back to our old selves if we could -- for sure!! And maybe some of us will -- we are in exciting times for this bag o' sh!t illness.

But in the meantime, I swear, you will find new friends and retain any of the old ones who are worth it. It hurts real bad I know. Every time my family or former friends blow off my illness it hurts real bad. But the people here, for example, will not blow you off. They will listen to you and connect with you in a way that still works for all of us. I think distance as a barrier to friendship is overrated.

Oh I am rambling.... and this sounds kind of patronizing. Sorry...but maybe you will find something in here that helps? Hope so...

 

[Kati]

Thank you Marylib

Something that comes to my mind and I better hurry before I lose the thought, is a quote from "Pay it Forward" movie which I jusst watched couple days ago:

"I can't reject you, you're too quick for me"

It just feels like I am rejecting people- or not contacting them- in order to avoid being abandoned-

It is a struggle at the moment- I am by nature an introvert, and was trying to be more of an extrovert by getting a network of artists, models and such for photoshoots for portfolio work. I am currently losing my contacts- very quickly because I can't really go out anymore- let alone figure out my camera settings- that's how I know my cognition is definitly not the same.

So it feels like I am hibernating- in a coccoon, in a limbo- waiting for a dr that knows about what I'm talking about- and losing conditioning by the minute.

Sorry if that all sounds depressing- It is nice to share feelings and thought with people that have been there and done that, and somehow seem to find positive ways to cope, regardless of the hurdle that come in front of them-

Like this ME woman that started an internet charity group for families with very ill children- I believe it was in the UK- sorry I don't have the link.

So what can I do with what I got? (this is more a question for me)

 

[starryeyes]

I understand just how you feel. I don't know what to say tonight. Just want you to know that I'm listening and you do have friends here who care about you.

tee

 

[jewel]

Kati-- I just wanted to wish you the best for the new year. It is late; I have no words of wisdom. You are in good hands with this forum. Sending you hugs, and now I will go to sleep. (Past 1 a.m. so I can't really think straight, but I did want to just let you know I feel for you.) Julie

 

[KC22]

Hi Kati,

It sounds like you have lots of possibilities. What you are experiencing now is the disbelief that this is happening. Slowly, you will accept your limitations and then you will be open to other possibilities.

If you could just sit outside your apt./house (maybe not now because of weather) and just watch all the movement; birds, trees, anything. Quietly, sit with them. Then maybe your creative juices could flow, you could photograph them, maybe for no one , but you.

Imagine a story about one the animals you see. Later you could write a story, a short book, whatever inspires you. ( You are inspiring me to get back to my 2nd book - I am writing it for my nephew).

If you can't go outside, sit and look out a window. Even if it is a tree. Trees can bring much peace because they teach us about stillness.

A book that began my understanding of awareness and presence was Eckhart Tolle's "The Power of Now." It could be any author that you relate to.

Isolation does not mean depression. I believe depression happens when we look backward and miss all the the things we had. You don't need to do that. It won't help. Live for today, only, not even tomorrow. What can you do today??? Accept today only, whatever it brings.

It took me about 1-2 years to do this, so it is a process. Believe you can do this!! There is an awareness that will bring you joy in the small things.

Hang in there. Remember, you are not alone...

 

[Kati]

thanks to all of you for your suport and explanations. It is great to have in times of difficulties and uncertainties.

 

[Marylib]

for Kati

thanks to all of you for your suport and explanations. It is great to have in times of difficulties and uncertainties.

Thank you for being here, too, Kati.

 

[Misfit Toy]

I really like this blog. I feel the same way. I am new on here so I don't know much and my cognition is awfu. Kati, I love how you wrote you are not contacting people because you don't want to be abandoned. I get that too well. I am a hider and run from people when I am in a crash which I am currently in one. People don't get it.

I hope someone reads this. I am not sure if I am allowed to post anything because I am new on here.

 

[Jody]

Hi Spitfire,

Welcome to the forums.

You are absolutely welcome to post here. And I expect lots of people will read it.

I hope that spending time here will help with the feelings of abandonment and invisibility -- or the feeling of needing to hide.

Hopefully you will find suggestions that will help you, and support from other people with similar experience to yours.

 

[GHK]

I'm new here too, just learning my way around. Looks like an accepting group. I hear you Spitfire.

 

[Jody]

Hi GHK,

Welcome to the forums.

There are some great people around here. I hope you will feel at home.

 

[GHK]

Thanks, Jody. It is a lot to try to take in all at once, but the people do seem nice.

 

[Jody]

GHK,

The nice thing about a place like this is, you can take it all at your own pace.

Think of it maybe like a small town, where you go exploring when you feel like it. You spend time in this part of town, then wander off to another ...

You might decide to spend most of your time on one forum or section, or even one thread. Or you might hop around a bit, till you find something that suits you.

And on days when you are tired or having cognitive problems or some other symptoms arise, if you don't feel up to coming here at all, ... we will still be here later. If you've posted and someone has replied, it's ok if it's a few days ... or longer ... before you post again. We all know what it's like. We all cut each other the same slack, cos we all need it.

Take your time.

 

[Kati]

Spitfire and GHK, welcome to the forums in here, for most part everybody is friendly in here and everybody understands. I am newly diagnosed, and I am really glad to come here and read people's experience, learn about what's new , find out what we can do to help.

As for isolation, I am glad that my words can help and that you understand. Being chronically ill is new to me, but on top of that there is this illness that no one lknows and no one care about.

Hugs, Kati

 

[spit]

I still struggle with the isolation myself, honestly. I think it's going to remain a struggle for me, though it's certainly one I feel better equipped now to push at and challenge than I did when I was first getting really sick. I got sick in the fall a couple of years ago, and that winter was the darkest of my life so far, mostly because of the feeling of isolation -- I wasn't communicating well, I was getting nowhere with doctors, friends didn't know how to support me, and many didn't know how to respond at all (I got a lot of the good ol' eyes glazing over response, anytime I started talking about my health -- which was, of course, the big thing in my life, so I couldn't not talk about it, either). It's really, really hard to get through that, so know that you absolutely have my sympathy and understanding here. I think there's something about being sick -- being sick from which "better" looks increasingly like a pipe dream as you go -- that is just inherently isolating. The people world was built by a bunch of healthy people, and our culture in particular really would often rather ignore chronic illness than really engage with people living with it. You don't have to humor that. My take is, if you're tired and need to limit what you're doing, go with that regardless of expectations, but if you're feeling up to it, don't let them get away with pretending you don't exist or that your value as a person is somehow diminished, because it's not. If you add up all of the chronic illnesses, you've got to figure that this whole world has a heck of a lot of folks in it who deal with these issues all the time; they're major human issues, not some kind of rare, weird thing, and the rest of the world needs to get that through its sometimes thick skull.

I don't even know if I have CFS, honestly. I'm mostly here because I don't have any idea what I do have, but this community seems very largely supportive and broadly understanding of many of the same issues I'm facing regardless -- difficulties with diagnosis and testing and getting doctors to take things seriously, hard times with friends and family who don't know how to relate to an illness they seem to suspect is behavioral, frustration with the constant limitations I have to deal with daily. Those are all common experiences here, I think; most of the time, you'll find that you barely have to explain them at all, because we've mostly been there.

Hang in.

 

[Kati]

Spit your perspective is interesting and also bang on.

It is interesting that you say that you don't know if you have CFS. In some way, here, no one care if you got it or not, they will accept you regardless. Indeed it's the issues that we share , isolation, uncertainty, chronicity, disability, difficulty relating to doctors, etc... that makes the glue and keeps us together. It would be really hard for a non chronic to live in this forum, because they are all concepts that are difficult to grasp for healthy people- I mean who didn'[t tke their health for granted when they had it???

I find this forum to be a refuge, a safety net and some place to look forward to hang out especially when I had a tough day (like today). And one of my forum friend was there to pick me up- (thanks A)

I truly don't know how PWC did survive in the 8's and 90's when there was no internet and sharing of information the way we have right now. I am thankful.