Pain is beating me, things are getting worse and I don’t have to pretend they are not

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Sometimes the pain beats me.  Lately the pain has been beating me.  I’m in full body megaflare today, and I have been only semi functional since Christmas Eve.  I look around and everything is chaos.  Dirty. Out of place.  That only makes me feel worse, so I have to let it go.  Let go of everything I can’t change. That’s a long list…

My kids are fine, they are enjoying doing their own thing.  My daughter is a little afraid…I reassure her that I am fine and not going to die.

Over the Christmas period I have been eating some things I shouldn’t have. I have been mostly allergy aware, but there were some foods that I didn’t make, and therefore I shouldn’t have eaten I guess.  Because I eat so little, I thought I could get away with it.  My Eosinophilic esophagitis appears to be getting worse though.  Along with every joint flaring this morning, as they do every morning, I woke with crushing chest pain.

I was pretty sure it wasn’t cardiac pain.  And my heart rate was more or less normal.  It gets higher when I’m in a lot of pain but that’s understandable.  It is centre of the chest pain, more left sided, radiates to the shoulder blades, and jaw, so on paper, it sounds just like a heart attack.

Except I have angina, and I know what heart pain feels like, and though this is similar, this feels different.  Not cardiac.  Bloody painful though. And it lasted a full three hours before it started to fade.  Esophageal spasm…I think. This means I’ll have to go back to basics, allergy wise. Start the Top 8 elimination diet again.  Not keen on that. It’s a tough diet and it takes a lot of determination and planning to stick to.  I’m all out of both of those at the moment.

I’m just so over being sick, all kinds of sick.  I’m tired of my life revolving around some symptom, drug, or upcoming procedure. I am going to have to see my gastroenterologist, I’ll need another scope.  I’ll need to see the dietician and the immunologist.  Blerk.  I’m tired of feeling lousy – I never feel good.  I’ve given up on good.  Lowest I get is a pain level of 6, and as I said, the pain is beating me lately. I’m just not coping with it any more.

‘Coping’ means sticking a smile on my face and making the best of things.  Coping is the sensible thing to do, the only thing to do.  Coping is keeping a good attitude and being grateful for the good things.

Instead, I’m feeling very sad, and a little afraid.

I stay firmly in the present and don’t think about the future, because the future scares me.  Realistically, its potentially very bleak.

Friends offered to come and spend some time with me today, but I was too sad and feeling too awful to let them see me. I’m grateful that they cared enough to want to drop by.  I wouldn’t have been able to hold it together though, I would have just made us all feel miserable.  No, I know they wouldn’t have minded.  But it is the thought that counts, and the knowledge that they would have come made all the difference to me today.

I know what my health situation is. I understand the implications of the arthritis, the allergies, the co-morbidities, my chances of cardiovascular disease, or pulmonary disease, the risks attached to all the prednisone I am taking and have been taking for years.  The opioids.

Most people don’t understand all of that, so they can’t empathise. You can’t empathise if you don’t understand the problem.

Sometimes the idea that I am never going to feel any better than this is overwhelmingly sad.

I wake up every morning, with bad pain in all my major joints.  I take oxycodone and I wait.  During the day, pain improves.  Most days I have a few hours where I can get things done.  But by evening the pain is bad and everywhere again. I am exhausted from fighting it, even though I have spent most of the day doing nothing.  I wake several times a night from pain.  Lately I wake every night with a numb limb or two.  That’s worse than the pain to me right now, because I don’t know what’s causing it, and I don’t know how to stop it happening.  I’m afraid that the numbness won’t go away. What happens then?  I won’t be able to look after myself anymore if that happens. I’m barely managing now.

I depend on oxycodone to get through the day, and I’m sick of depending on oxycodone. It’s not a nice drug. I hate the side effects. I try to take as little as possible.  Today I just wanted to have a clear head, so I took the lower dose. But the pain required the higher dose.  And the additional chest pain from the esophageal spasms should have tipped me off to just give up, write off the day, and take the higher dose.

Instead I let the pain get so bad that I was a tearful mess.  And in the end I took the extra oxycodone,  and then a little more to get the pain under control.  But now I am doped to the eyeballs, and my head is full of cotton wool.  The thing I wanted to avoid.  But it’s better than the pain.

It all still feels very much no win though.  Pain that I can’t bear or a drug that I hate.

Somehow I have to find some gratitude, because being doped is still better than the foetal position and crying that life isn’t fair.  We all know life isn’t fair.  Yet I don’t feel very grateful.

I know what I have to do to pick myself back up again. I’ve done it hundreds of times. Tomorrow is the last day of 2016.  I hate to wish my life away, but I’ll be happy to see the back of this year, like so many others.  I have this deep sense of foreboding, however.  Like there’s something coming.  And it’s not so far away.  No doubt this feeling is just a drug side effect, or good old garden variety anxiety playing with my head. But it’s a feeling that’s hard to shake.  Sometimes having a creative mind isn’t a good thing.

So I tell myself not to be silly and that things will get better. And they will.

I want a better life than this.  I want so much more than this.  Christmas is a very hard time of year, and the only take away I had this year is that people ‘understand’ right up until the moment that my illness inconveniences them.

The hardest thing in the world seems to be to get some genuine sympathy.   Sometimes that’s all I want.  Sympathy.  Sometimes I just want someone to say ‘FFS, you got a shitty deal.  I’m sorry you got such a shitty deal.  Talk about it as long as you want.’

But I can’t even talk about it when I’m in a state that talking at all brings on tears.

So first, cry alone for a while.  Until I feel better.  Then try to eat something. Pureed apples.  Safe food.  Then find those friends.  Spend some time.  Have some fun.  Forget that there is an onslaught of medical appointments ahead.  Go to denial land for a while.

Because its evening now. It has taken me all day to choke out one blog post. And evening means more pain.  And the other chest pain – the angina pain. But I don’t want to take more oxycodone, it will only make me sick.  So I’m wrapping myself up in two heated throws, and I’m really, really grateful for the rain and the cool change that has come through.  The rain is soothing, and I am lying here on the couch and feeling the breeze.  The dogs are both wet and stinky and so is the cat. But he is mercifully quiet…and there might even be thunder.  Maybe there will be lightening.  Maybe I can get my camera out and get a magnificent shot of lightening.  Maybe.  Cos I can still dream.

 

13 COMMENTS

  1. One day at a time.I’m so sorry you have really had the short end of the stick this year and very much hope 2017 is better for you and everyone else. If you get that lightening photo please post it your photos are beautiful.Take care xx

  2. You aren’t alone. You are understood, even if it’s just by a fellow spoonie over the Internet. Autoimmune disease sucks. It robs us of our humanity. All we can do, in the words of a wise blue tang. is “just keep swimming”.. keep doing what we know works, and hopefully tomorrow will be better. Prayers and positive thoughts for some restful sleep and a better tomorrow. <3

  3. You know what? You have been dealt a really shitty hand and it sux big time that you have to deal with it on your own all the time. I’m on my own with chronic disease too and a single mumma as well so I hear you and I bloody feel for you. You have bullets flying at you from every direction possible with next to nothing to help shield those bullets. I wish I had some enlightened advice to give you but I don’t. All I wanted to say is that I am listening to you and thinking of you and wishing that your luck would change for you. Sending love and light xxx

  4. Your esophageal spasms may well be a side effect of the Oxycodone. My husband suffered from esophageal spasms until he realized that they were brought on by any product containing Codeine and by Oxycodone – subsequently confirmed by the Doctor as an intolerance to these drugs. Please take a note of when these spasms occur in relationship to when you take Oxycodone and then talk to your Doctor – he may be able to suggest a different pain relief medication. Keep positive and I hope you get some relief soon

  5. Since I could have wrote this post myself, like you crawled my head and wrote what you saw, for my post today, I’m just going to link to this. You typed almost everything that has cossd my mind today. Be well, and *gentle hugs*!

  6. I have had severe rheumatoid arthiritus for since 2011 and it has ruined my life . I have been on every drug for it from methotrexate to the humira and enbrel shots and even the last 2 years retuximab …I have nothing to look forward too but a certainty that unless God heals me my life is done …i was sent a letter recently that the hospital could no longer give me my infusions due to my husbands army retirement being too much …i have been told Australia has the cure for this condition but the states wont allow it as it hurt the pharmaceutical company …Please pray for a cure for this debilitating disease ..Much love and prayers to you all …

    • I’m sorry Vickie. It is a very cruel disease, especially when severe, and you don’t respond to the available treatments. Are you in the US? I’m in Australia, I can promise you there’s no cure here either 🙁

  7. Hi Vickie I just wanted to “second” what she said about a “cure”. I’m in America, there is no cure here. There is lots and lots of false information out there about RA, that’s why websites and blogs like this one and rawarrior.com are so important. rawarrior.com would be a good place for you to go and read, Kelly who is the site owner is also a “non-responder”, and her site is huge with tons and tons of information, and thousands of people like us who comment and write in. Also, beware of the video’s on youtube spouting that “they have a cure”. Be well!! **gentle hug**

  8. I’m 36 years old and have had RA since the age of 17. I had my first TKR at 21, due to infection they replaced the replacement when I was 23 and my other knee was replaced last year. Both knee replacements don’t ‘work’ properly (I can’t bend my knees much and have scar tissue and bone growing where it shouldn’t), my hands are severely deformed (Swan neck & boutonniere deformities), my arms don’t straighten because of my elbows. I’ve been on Methotrexate since the start, was on Enbrel for 7 years but it stopped working, had a few rounds of Rituximab but it made no difference. I’m now waiting to see if I can start on Tocilizumab. I have a wonderful 5 year old daughter who I sometimes feel misses out on a lot due to my RA. No one I know understands what it’s like, friends say things like ‘I’d love to spend the whole day in bed like you’ or ‘just have some Ibuprofen, you’ll be fine’. I know it seems like I’m having a pity party for one but I never open up about this, I used to; but lately I feel like I can’t speak without bursting into tears. I’m sorry for rambling on.

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