Monday, September 30, 2013

The Last Straw?

I'm tired of this. Fighting with doctor's over medical bills, the sense of aloneness, and difficulty making friends due to this illness. Trying to convince doctor's that I'm not exaggerating or malingering, having to explain why I can't join social events. Being poor. I'm sick of it. I'm sick of doing everything alone. Having to drive myself back home from a painful medical procedure while in severe pain, going to appointments by myself hoping I'll be able to remember what was said. The struggle for sleep, the struggle to gain muscle, the inability to dive into my research like I used to.

I can't even go out to explore because I can't friggin drive far. Not that I could right now anyway due to the back pain but when I look at all the activities I could get discounts on through groupon I want to cry. I don't mind doing things by myself at all but I sure would like somebody to do things with. I can't drive but I can, or I used to be, fun and easy to be around.

Everyday I ask the Universe to have mercy on me and just let up already.

I've been giving it until my birthday to see if anything shifts or eases. My birthday is Sunday. I'm now carefully weighing my options.

There's a line in a popular song by Rihanna called "Stay". It catches my attention each time I hear it. It goes:  "this isn't much of a life you're living". So true. Not much of a life. Not much hope left, if any.

Yesterday I woke up and was in such severe pain I could not get out of bed. My back, which has a herniated disc at the same level (L5-S1) as before (when I had surgery), was hurting so bad I wanted to go to the ER. I could not walk downstairs for the next 4 hours the pain was so bad. I've been taking massive doses of Advil, Vicoden, and Soma in spite of the risk of a stomach bleed due to NSAIDS and gastritis. I'm icing as much as I can. I only use pain meds as a last resort.

I'm taking all these meds just so I can walk around my bedroom! It's not to go out and do something but just to be able to bend over and feed my cat or clean his litter box.

This isn't a life at all.

Because I have Medicare I can't get in to see the neurosurgeon until November 27th. WTF am I supposed to do until then?

The pain I'm in feels like the last straw. I've never felt this sort of pain before. It's just a tad better today. A tad. Not enough to go downstairs yet. I may need to take a Vicoden on top of the large dose of Advil I took an hour ago.

I know that to ease pain I need at least a lumbar epidural. If that doesn't work the next step is either going to a stronger pain medication or fusion. I can't afford the epidural or surgery.  Pain meds not only slow my already slow gut motility but they exacerbate the gastritis. I can't afford more slowed gut motility especially right now as my body recovers from the medical procedure I had last week.

I'm too tired to deal with this level of pain. I'm dealing with way too much stuff alone. I'm at the tipping point. I'm fed up with all of this.


Jessrose21 said...

The frustration and pain you're experiencing is almost palpable through your blog! I'm sorry you're dealing with so much crap all by yourself. Please don't give up! This is probably an obvious suggestion but could you call an ambulance and tell them you are in so much pain you can't walk? Then they could carry you on a stretcher. You shouldn't have to wait so long to get some pain relief!
Does your cat cuddle with you a lot? Mine are such a comfort to me, especially when they purr. That's one of the most soothing sounds in the world!
I'm praying that today brings you hope and healing.

Anonymous said...

I'm so very sorry, I've followed your blog for some time now and watched as things have become progressively worse for you. It's just so unfair that you are going through so much horrible pain and doing it alone, my heart goes out to you.
I've often wished there was something that I or someone could do for you, I know how it feels to feel like you're knocking your head against a brick wall and getting nowhere.
I know there are sites where you can promote your needs and ask for funds to help with things like medication and surgery, but I'm not much help because I just can't think of what they're called - perhaps someone reading this can help.
Please hang in there, I've often found that just when I want to give up, something shifts and opens up for me. Sending you lots of positive thoughts so that the universe listens to your needs and something comes through for you.
Oh how my heart aches for you, sending gentle hugs and love, Caron

Anonymous said...

Try this website

Hugs, Caron

Creek said...

Hi - I feel some kinship not only as a co-sufferer from ME, but being a Bay Area native too, and having fallen ill close to the same time as you - my kids and I got sick in May 2007.

I want to ask you not to give up. Different reasons work for different people so pick one:

If you give up you're a wuss.

If you give up you don't get to find out what happens next.

There might be a research breakthrough at any moment so don't give up or you'll miss it.

Suicide hurts those you leave behind.

It might be messy and/or painful.

It might damage the delicate balance of the universe.

There are still books you haven't read, music you haven't heard and art you haven't seen, not to mention blog posts you haven't written.

Believe me, I have had the days I was close. We all do. But the number one reason I want to selfishly ask you not to give up, is that WE NEED YOU. We need every articulate and passionate voice we can get, to speak up for us.

Each one of us does what activism we can, gets burned out, retreats, regroups, then contributes again as able. We can rest, but we cannot completely retire.

Healthy people aren't fighting for us. We have to do it ourselves, and we can't do it without you. Please stay, for all of u.

Sue Jackson said...

Haven't visited in a while and am so sorry to hear things are so bad for you right now. I know how much you have been through - last I heard form you, you had found a place to live and things were looking up.

You are not alone. It may be difficult to make friends with others in your new neighborhood, but you have a lot of friends here in the virtual world who care about you very much and who completely understand how you are feeling right now. We have all hit these low points ourselves at various times.

Once when I was at a low point, a friend who'd been through his own health challenges simply said to me,"I'm thinking of you. This too shall pass." It was so simple, but it had a profound effect. True the ME/CFS has not gone away, but that low point - and the feelings of desperation and despair - did pass.

I wish I lived nearby so I could come over and help you through this difficult time. I'll have to settle for virtual hugs instead and will leave you with this, my favorite quote which I read every night before bed when times get tough:

"Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying 'I will try again tomorrow'".

I know you have that kind of courage in you - I have seen it before.

Thinking of you, my friend - please send a message if you want to "talk" online or even just vent.


Live with CFS

Jo said...

Hang in Terri. You say you had a procedure recently. It may be you are having a bad reaction to that, especially if you had anaesthesia. I urge you to find someone to talk to even if it is a helpline. We have the Samaritans over here and they are great for just listening. Also, we are there for you on Spoonies on FB. Perhaps you just need to surrender for a while. It doesn't have to be permanent. Please post and we will support you.

Alex Cook said...

Hi Terri,
I can't know what it is to be you and what your pain is like, but I can so clearly identify with so much that you said. The time before my spinal fusion when I was often in uncontrollable pain & isolated having just moved 2 weeks before the accident that lead to L4/5 L5/S1 injury. I was often housebound for months and spent 5 years of isolation in that house. And I too felt that it wasn't enough to keep going. So being in incredible levels of pain with long long waits to see medics who just sent me round the loop again....well it sounds horridly familiar. Surgery didn't solve things for me thought it did stabilize things as bit, but finally a consultant in pain management did take me on with the determination that I couldn't be left like that, he was I suppose one of the lifesavers for me. Not the general pain management team but the person who deals with medication & procedures for pain relief.
None of what I said above is about me, only that I really do get where you are coming from, and I did hang on in the end though I can't really say how, just one moment at a time and lots of distraction helped. I asked for support & eventually things did change for me. Though I couldn't have imagined things ever improving, or being believed and helped.

Remember if you had sedation or general anesthetic there is almost always a massive low mood are a few days, it passes. Just in case that applies.

But most of all, I can't ask you to stay for it is you that is suffering so much. I can and do send you love & heart-felt hugs, and say that reaching out in any way is courageous and sometimes is enough to just shift the internal pain if not the physical pain.
I was sent a quote once, something about the coldest time of day is just before dawn.
May that be true for you,
I so feel for you,
Alex x (from FB group)

Cusp said...

Oh my dear, you have been through so much and kept plugging on. I can hear and feel your despair from this latest post.

I think that many of us in the M.E. community have been in a similar position when we feel that we can't bear any more, that it's all too much but in the end we have, somehow, won through by taking each day moment by moment and coming out the other side to better times.

There are many people that you know from around the globe who do care about you and will support you (if only virtually...for, being far away geographically, that's all we can do) . Please try to think about contacting any of us through email or FB or maybe a helpline as Jo suggests.

In my last relapse, when I thought I would never emerge again, I clung on to my favourite Julian of Norwich quote

'All shall be well, and all shall be well and all manner of thing shall be well'

--- moment by moment I hung on to that and gradually returned. I hope that you might find some comfort from anything similar.

We are all standing with you and offering gentle hugs xxx