Stream of Consciousness Saturday

Welcome!

I’m taking part in a new thing, from the blog of author Linda G. Hill.  Every Friday, she provides a word to get Bloggers writing, and I found out about it from my friend and fellow blogger Amelia at youcanalwaysstartnow .

Today’s word is “call“. The idea behind this stream of consciousness writing is that you write without thinking about a subject using whatever word or phrase is given and you can only edit for spelling errors. So, here goes.

After posting about One Being the Loneliest Number, I had to admit to myself that I have been very lonely lately. I don’t have many friends on the Island and  those that I do have are busy people and not easily accessible when it comes to getting together. This week is especially bad as Ray is away on a bike trip with the guys and won’t be back until next week on either Tuesday or Wednesday. That’s only 5 days but it’s 5 long days for me. I miss him even though we don’t do a lot together when he is here because he goes to bed so early because of his long days at work.

Anyways, so I was feeling particularly lonely tonight so I went to my favourite online Facebook group and I posted about it. This group is a group of fans of Jenny Lawson’s, the author of Let’s Pretend This Never Happened and Furiously Happy, as well as her book/colouring book You Are Here. And what I posted was my address and that I would love postcards and notes and cards to cheer me up. And people responded!!! I have a number of online friends from this group whom I dearly love and they were all so sweet…they’ll be writing to me soon. And other people who I don’t know well in the group said the same thing!! Plus I got three wonderful emails after leaving my email address for one person who is on bed-rest in the hospital awaiting the birth of her son, and those made me cry, and I just feel so loved and a whole lot less lonely in this big ole world!!

and all it took was for me to put a call out into the world to say I’m lonely.

If you’d like to take part in Stream of Consciousness Saturday, here are the rules from Linda Hill (all references to “I” belong to her)

1. Your post must be stream of consciousness writing, meaning no editing (typos can be fixed), and minimal planning on what you’re going to write.

2. Your post can be as long or as short as you want it to be. One sentence – one thousand words. Fact, fiction, poetry – it doesn’t matter. Just let the words carry you along until you’re ready to stop.

3. I will post the prompt here on my blog every Friday, along with a reminder for you to join in. The prompt will be one random thing, but it will not be a subject. For instance, I will not say “Write about dogs”; the prompt will be more like, “Make your first sentence a question,” “Begin with the word ‘The,’” or will simply be a single word to get you started.

4. Ping back! It’s important, so that I and other people can come and read your post! For example, in your post you can write “This post is part of SoCS:” and then copy and paste the URL found in your address bar at the top of this post into yours.  Your link will show up in my comments for everyone to see. The most recent pingbacks will be found at the top. NOTE: Pingbacks only work from WordPress sites. If you’re self-hosted or are participating from another host, such as Blogger, please leave a link to your post in the comments below.

5. Read at least one other person’s blog who has linked back their post. Even better, read all of them! If you’re the first person to link back, you can check back later or go to the previous week by following my category, “Stream of Consciousness Saturday,” which you’ll find below the “Like” button on my post.

6. Copy and paste the rules (if you’d like to) in your post. The more people who join in, the more new bloggers you’ll meet and the bigger your community will get!

7. As a suggestion, tag your post “SoCS” and/or “#SoCS” for more exposure and more views.

8. Have fun!

There is always hope!

 

One Is The Loneliest Number

Living with Chronic pain is lonely.

I’ve been very lucky in my life with chronic pain in that I have a wonderful support team. My husband is amazing – he truly gets it and understands what I’m experiencing as he’s starting having some chronic pain issues of his own. My kids are terrific too and are my biggest cheerleaders. I’ve been blessed with amazing friends who are sympathetic to what I go through on a daily basis, and who understand when I need to cancel plans at the last minute because of my health.

But I’m lonely.

Chronic pain causes you to isolate yourself because you hurt so much all the time, you just don’t want to be around people, yet you don’t want to be alone either. You never know when a flare is going to happen, so you tend to not make plans because you don’t want to be that flake who is constantly cancelling things. I’d rather try and make spontaneous plans but it never feels spontaneous to me…it actually feels desperate. And nine times out of ten, when I do make plans, I end up cancelling them because I wake up on the day of the big event feeling horrid. It’s generally because I’m exhausted as well as being in pain, but no amount of napping is going to make me feel well enough to go out. Of course, if I didn’t have plans that day, I’d have slept just fine the night before. It seems that I’m busy sleep stressing about the date, knowing I’m going to wake up feeling crappy, and then sure enough because I’m sleep stressing…I wake up feeling crappy! And even though I have great friends, I’m sure they must get tired of me flaking off all the time too.

It’s even harder when the people in your life don’t “get it”. This quote comes from Stephanie Schwerin Uplook from a Facebook Fibro Group I belong to and is used with her permission.

This is what she had to say:

Fibro sucks…having family members that don’t get it and don’t listen to one word you say when you try to explain how and what you feel. It’s not cancer, it’s not something they know anything about, it’s not terminal, it’s not that bad. You look fine…I’m really tired of being brushed off like it’s not that big of a deal. They don’t know how bad it can feel, the physical and mental toll it takes on me. No clue, no sense in trying to explain it. This last flare lasted a week and it was bad yesterday and today I’m tired and sore, I feel like my body is trying to recover from the flare, depression has kicked in. I’m wondering if this is how the rest of my life will be.

You know what’s the most aggravating?? I’ve changed so much of my lifestyle to get rid of this crap and I’ve seen no change. I swim every day, I have weights for the pool, I watch what I eat, I’ve researched and researched, I walk most days, I take magnesium supplements and I’ve seen a Rheumatologist at the Mayo Clinic. Those are just a few of the things…and for everything I’ve done, it seems to be getting worse with every flare. That’s depressing. I’m 49 yrs old and to watch me get out of a sitting position after only 5 mins of sitting, you would think you were watching a 90 yr old. My husband can’t believe how quick my body locks up, even after I’ve been in the pool for an hour or how I can’t turn over in bed once I lay down. Getting up out of bed is another struggle…I’m so tired of this crap. I really don’t talk much about how and what I feel anymore with anyone. I get tired of hearing myself complain about how I feel, I’m sure they do too. I mostly have a good positive attitude and can deal with this but today, I’m tired, I’m tired of all of this.

Wow…that’s painful to read. But it happens to most of us and if you’re reading this and you have Fibro or Chronic Pain of some type, you’re probably nodding your head and recalling when this has happened to you.

Lately, most of my mornings have started off with a good cry…I’m 56 and it just hit me recently that this is NEVER GOING TO GO AWAY. No matter what I do, or how good I treat my body, this Fibro is never going to go away and in fact, will probably get worse as time goes by.

That’s a thought worth getting depressed about. How does one stay positive when that’s what you have to look forward to…nothing but more days of pain and exhaustion and the people you love not understanding you, so you continue to feel guilty about having a disease like this, like it’s your fault somehow.

All I can say for sure is that it’s NOT your fault, and you have to take as good of care of your body as possible and not let the words of others hurt you. They mean well, but they don’t understand what it’s like for us, because there is no way to make them understand. No description we give them of Fibro can possibly come close to actually living it. Just do your best to keep your spirits up, try not to blame them and do what you can to stay as healthy as possible. Find as many comfort measures as you can on the days you feel the worst and make a list of all the things that are good in your life so you can refer back to it on your really bad days. Those are the things I do. I also try to reach out to help others as it takes me out of my head and puts me into “action mode”.

So what do you do when it comes to loneliness? What do you do when you need help? My dear friend Brenda Teichroeb Heywood suggested this particular blog post today. She is a single mom of 7 children ranging in age from adult to 3 and is going through a very difficult situation right now plus getting ready to move. She had this to say:

“I have always been the type of person who did not want to barge in during a sensitive time for someone. In their pain, I did not want to bulldoze my way in and then expect them to be grateful for my “help”. Yet, here I am, desperate for help in this very drowning experience and so many are sitting back and waiting for me to tell them what I want. I am just so overwhelmed, it would be better for someone to just jump in. I wonder if it would be a helpful post to write to those who live with or know people to struggle with chronic pain. Is it better to jump in and help the person? Is it better to respect space and wait?”

I responded back to her:

“Sometimes the people able to help just don’t know how to. Personally, I think people stand back waiting to be asked because they don’t want to interfere with or disrupt a person’s life. They don’t want to intrude. It’s like saying “call me if you need anything”. They’re willing to help, but the onus is on you to reach out for it.”

And she replied:

“It’s hard. To be so exhausted and then still do the asking. One friend has offered over and over that she’ll help me in any way. I’ve asked multiple times for help with packing and sorting and she has yet to show up. Sigh. This is not for forever, but I’m worn thin. And I think the little girl in me just wants to be rescued. Maybe what we need from others is a person by person thing or season by season.”

Isn’t that how we all feel…like we want to be rescued? Yet the only person who can truly rescue us from loneliness is ourselves. If no one knows how we’re feeling, we can’t blame them. And if no one “gets” what we’re going through, we either have to keep finding ways to explain it or realize that perhaps they just don’t want to get it. Maybe they don’t believe us, or maybe they’re too overwhelmed with what we experience. We frighten them with the intensity of our pain and fatigue and finality of this disease. They know it’s never going to end just as much as we do, but they don’t know what to do or say, so they do and say nothing. Or if they say something, it’s a joke. Or a nasty comment. Defence mechanisms come in all shapes and forms, so we can’t take it personally or we’ll go mad.

Loneliness goes hand in hand with Chronic Pain and Chronic Fatigue and all Invisible Illnesses. It’s up to us to learn how we want to manage it. Do we want to reach out to others or have them reach out to us? We need to communicate that to the people we love, so they know what the expectations are. You’d be surprised how many of your friends may be sitting there, waiting for you to call to say you’d love to get together with them – and they’ve just been waiting to hear from you to give the go ahead.

One is the loneliest number but it doesn’t have to be. Pick up the phone, send an email, say hi on Facebook…do whatever is easiest, but make a connection soon. Turn your one into two.

There is always hope.