Today I’m not feeling very well. I have not been feeling very well for the last couple of days. Sunday was a very dear family member’s baby’s christening and even though I had pain I pushed through to go and spend time with the family.
Even though my body was screaming for me to stay in bed and my anxiety level was pleading with me not to leave the house, I still push through it and was able to stay active and alert for 8 hours. I did have a couple of panic attacks, which is to be expected since sometimes being stuck in either your bed or in your home because of the pain and the fatigue associated with illnesses like fibromyalgia can cause a kind of Agoraphobic type anxiety.
I have to give an immense amount of credit to my husband because on the very first panic attack, which was threatening to consume all of what was left of my sanity, he was able to get me back into the present and without having him there I don’t think I would have been able to get past that initial attack. It can be so hard sometimes because I get so much anxiety for just simple things… having to leave the house to just go buy a gallon of milk….having to leave the house to just go to the gas station , these are everyday errands it should be simple, but they aren’t for me.
They are every day battles because since I’ve been sick for as long as I have been, (going well over 6 years) what I found is when I have relapses that are as long as this past one has been… this past month marks 2 full years… I’ve not only developed social anxiety, but I’ve also developed environmental anxiety.
I spent a good maybe 45 minutes to an hour locked in the guest bathroom putting on and taking off my makeup because makeup is my safety net…. sort of like a child who has a nightmare will have a special teddy bear, makeup is my special teddy bear. Make up for me is normality, something that keeps me rooted to the person I was before I got sick, it’s also something to give me repetition that allows me to focus my mind on the task that I’m doing rather than the anxiety that’s creeping into my throat.
So here I was 45 minutes into everybody showing up at my family members house and me not wanting to leave the bathroom. My husband comes to check on me and I had a meltdown. It’s not so much that he became my comfort (even though he truly is) he just has some magical way of pulling me back from my anxiety attacks. He knows how to make jokes or comments that make me feel so much better than what that panic is. In this case, he says to me don’t cry you know what happens when you cry you’ll ruin or your mascara, and we all know you hate waterproof mascar so it will just ruin this look.
This one ridiculous little statement cause me to laugh so much that my eyes watered and the glue lifted from my lashes. So I say I’ll be out in a few minutes I slapped more glue back onto my lashes fixed my hair put away all of my makeup and joined the living. My second panic attack was a smaller one but it was still very fear controlling, and it was over something so simple, children playing in a pool laughing and having fun (while very warm and amazing) and one child let out a screech that , just for some reason, triggered my anxiety and cause me to have a panic attack.
Before I say how I got this panic attack under order let me first say I do not condone giving medication that was prescribed to you to anybody else. One of the family members, the one that I talked about in my last post, also suffers fibromyalgia on top of the other mitigating Illnesses and she suffers anxiety attacks as well, she gave me an anxiety medication to help me just calm down for the rest of our stay at the party. Again, I do stress that one should never share medication, however in this particular case since we do suffer from almost identical secondary symptoms associated with our fibromyalgia and we’re on a lot of the same medication we did know what the interaction would be with the medication that I am on, so I felt that it was safe to take this particular medication.
This allows me to be able to stay in the present and stay engaged in conversation and just simply enjoy the fact that I was away from my home and out in the sun for 8 full hours well almost a full 8 hours it was maybe more around seven and a half hour when my pain was a little bit more than I can take and swelling that can be associated with fibromyalgia in and around certain trigger points was starting to swell beyond comfortable levels so I had to go home at that point.
I left that party with a smile on my face because it’s the first time since my trip back home to Philadelphia, that I was able to leave my home for more than an hour and for me that’s amazing, for me that’s such a gift.
So for the last 2 days, I have been on bed rest, something that I knew would probably happen. I’m not saying that every time someone with an invisible illness that is energy and pain driven leaves the house they end up with loads of days stuck in bed, however in this particular case I’m still dealing with a relapse and so pacing myself is the only way to keep me from being so sick all the time.
For me these past two days stuck in bed has been so worth it because Sunday was so amazing and that is in spite of my panic attacks. Sunday was so amazing and so ego boosting that I made a girl date with the family member whose house we were at to just go do a small mall crawl for Thursday. Do I think I may be a bit uncomfortable, a bit anxious?or possibly even bedridden for a few days after? Yes… 100% yes. Now ask me would it be worth it. When you get sick with any of the spoonie family illnesses sometimes people don’t understand what you’re going through and you tend to lose a lot of friendships and a lot of connections. Not all of the connections and friendships are lost due to another individual; Sometimes because you get so anxiety riddled you tend to just distance yourself from everybody.
The one constant in my battle with this illness has always been the family member who I’m going to hang out with on Thursday.
So if you ask me if it’s worth it. If you ask me why I would deliberately go do something I know will cause me more than likely to be sick for days, that’s the answer….. She’s never left my side. She’s always tried to encourage me to come hang out just to get me out of my head space and while I do appreciate other human contacts, I don’t necessarily consider them friends. For me they are more acquaintances because while everyone else will send me a message via Facebook or through word of mouth from someone else no one really ever takes the time just to see how I’m doing there’s never a knock at the door saying “hey just wanted to check in on you” or a phone call to simply say “hi sweetie I was just checking to see if you’re OK”. However this one family member of my husband who has grown to become a family member of mine has always been there even if it is just through Facebook, has always been there just to say “hey sweetie how do you feel today?” ” Hey sweetie I was hoping to see your face this weekend.” While not all the time that we can’t go to see her or that part of the family has it been associated with my illness (there are certain times where either the car has fallen apart or my husband has been working on the weekends) she’s always been understanding and truly forgiving and truly patient with what I go through with my journey with my being sick.
Even though I am stuck in bed I still play with my makeup it’s just means that I’m in a full face of makeup in my hair’s done while I’m in pjs (don’t give me that face, there is nothing in the rule book that says you can’t wear makeup in pjs). I do this because makeup is my happy place, it’s what keeps me holding onto a person I once was. I know I’ll never be the person I was before I got sick but what this this illness can not take from me is my love for makeup, my love for a good book, my love for amazing music or for a cheesy B-roll Syfy or zombie flick , or the company of people who truly care about me.
Well that’s all for now, thank you so much for taking a peek inside this spoonie’s make up bag. To all my fellow spoonies, when the storm hits batten down the hatches grab that one activity that makes you smile and get to work. This illness only beats us if we allow to take everything from us. Hang on to the love ones that support you and love you immensely, grab that book that you just can’t wait to find out what happens in chapter 3, pop in your ear buds and play the music you love the most as loud as you can, pop in DVD of killer Klowns from outer space and cuddle up with your boo your dog or just a very fluffy pillow and laugh at how funny movies from the eighties and nineties were, and never forget at the end of every storm there’s always an incredibly wonderful rainbow. And to all the non spoonies out there thank you from 1 spoonie to you, a dish ( which is what we call the people who support us the most) for being someone’s life line. And until next time remember always reserve a spoon for a little bit of lip gloss.