Sometimes it's ok to quit

Are you one of those who have flare ups or is your condition standard (whatever the level of discomfort and pain)?

I am pretty constant, pain levels are unpredictable when I'm resting but I know what kind of things cause extra pain and how to ease it. I'm thankful for that but it came with much trial and error and many tears. A flare up can reduce the strongest of people to their knees, willing to trade their soul with the devil. I know, I've been there too. I know we are all on different meds, have different conditions and different ways of the condition effecting us but in that we would all benefit if we keep a diary of each flare up for a couple of months, noting a variety of things:

• What you are doing when the flare up starts
• Check the weather and the temperature of your home
• What did you do the day before
• What is the flare up like
• How long does it last
• Does it ease up at any time, and when
• Is there something (even if you alternate it) that can give you some relief, even for a short time
• How long does it last
• How long a space is between the last and present one

Over about 2 months you will see pattern. Of course, try new ideas to gain some relief, double check with your GP/Consultant that you are doing all you can for yourself. Most of all, allow yourself the time to get through the flare up.

This last two days and nights I have been waking up about every 10 mins or so with pain in my left knee that has me reduced to tears, let me tell you, I'm a pretty tough cookie but this kind of pain has me at its mercy. It's ok to cry, it releases the frustration to give you an extra little bit of fight for the next bit. I can't up my dosage in these times, I can't move my legs freely so even moving to pull my leg to a different position is a challenge but I'm not a quitter. In general this happens for 3-4 nights then it's gone for a few weeks so I find it manageable. 

Mobility for me is pretty straightforward; it's a challenge but through a flare up it plummets to about 10% and that's a push. It's the time I give myself permission to veg on the sofa, delegate the kids and just get through it the best I can. I admit that sometimes I get agitated and frustrated to the point where just one more thing can tip me over the edge and I'm in emotional meltdown. Thankfully I know it's temporary and therefore I know I get over it pretty quick.

On this current flare up (which is due to end tonight or tomorrow) I have used a cooling cream. The research doesn't show any counteraction with my current medication, it's recommended for osteo arthritis (my osteo is not my issue, it's plodding quietly in the background not really adding to my pain or discomfort) but it eased it. I can't name the product I used as I wouldn't want to be held accountable for giving the wrong info to someone. I was not advised or prescribed it, just a choice I made independently. However, for a few hours my knee and my fingers felt cool and a little numb which in turn eased the pressure and the pain. 

**If you decide to give this a go, please, please speak to your medical care planner first**

Another thing that I tried this time round is doing my physio work outs. They are nothing strenuous, just gentle rotations of the ankles and wrists, I didn't bother with the knee ones but I did work on gently straightening them out 2 seconds a time. I worked on those 10 times each every 3 hours or so. A flare up cannot always handle this so if you can't don't worry, just do what eases it for you.

Last but not least, we all know a flare up is almost like a personality change! When you have extra pain, stiffness, less sleep, less mobility and the world still wants you to carry on as you did a week ago all you want to do is scream to them to go away, get a grip and stop assuming to know what you are feeling! Yep, I've been there, I'm regularly there but now I just hum and ahh and say nothing, people are well meaning most often but unless they have your condition they really have no idea, but they're trying. We have to be grateful for that. Use your pain meds to the max of your prescribed dosage, don't let the flare up take more of you than it needs to, if you curl up in bed for a week then you know what? That's just fine too. This is your condition, your body, your coping mechanism so while I'm not saying (or condoning if I'm to be brutally honest) it's ok to feel sorry for yourself, it is ok to just take the time out and get through it.

Today was my day of physically quitting. I gave myself permission for it. I cried, I got angry and I wanted someone to tell me I'm not a loser b/c I couldn't 'man it up'. I wanted to be allowed to act out my frustrations and have someone just hug me, not fix it or advise me but just let me have my release. I didn't want to be the strong one, the one who keeps it going b\c the kids are around or remember there's worse out there than me. For a little while I just wanted to let go of my feelings and it to be ok. Life doesn't work like that though at times so I took a nap, woke up to the loveliest, cutest, sweetest, funniest 9 yr old stroking my face gently asking me if I want a drink that my heart melted at his efforts. He just wanted some mommy time, a cuddle, read another chapter in Horrid Henry and be assured that his world is as safe and strong as it is at any other time. That's enough for me.

I'm keen to hear how you get through your flare ups, how often do you have them, what do you do to ease them?

Debs