Well its been almost a month since my first Remicade, but somehow it feels so much longer. Its a strange thing to focus on my health when I have always tried in the past to ignore it. Yesterday my pain level was low. Green all day mostly just with aches. My exhaustion level was high though. I drove my husband to half a dozen car repair places yesterday, and the small trips felt like I had been driving all night. My fatigue was so strong I actually fell asleep at an intersection on one of my 10 minutes drives. I was home by four and in bed. At 6 I got up and half made dinner with some help and was back in bed by 7:30. My body literally wouldn’t move from exhaustion. I have most today to rest up before helping out my grandmother on Thursday and Friday. I will be spending my mornings helping her have an estate sale and need to be strong and as healthny as possible. I should be able to make it home by the time my son gets home from school and run him to his lessons then go to bed to save up for the next day. I work on Saturday, and Friday night some friends and I are taking dinner to a friends home who is unable to get out because of illness. I feel I am neglecting friends who could use some company and support. I have to remember that even though I am having a hard time there are others who are having a harder time and they need some attention as well. This weekend I am helping grandma and my dad, maybe next week I can find the time and engry to go see my dear friend Jena. She is such a fighter herself, dealing with chemotherapy and radiation the last year and still being an incredible mom. We have gotten each other through some rough days and I am eager to spend some time with her soon. Friendship is important soul food and I shouldn’t neglect it in my quest for health.
Category Archives: soul
Yesterday was an interesting day for me. I was mostly Orange on my pain scale all day, but I decided to push through with my plans. I went to see my grandmother in the morning, and then went up to Idylwild to meet with a gallery owner. I couldn’t have made even a portion of the trek myself. My pain would spike to levels that made it unsafe to drive. I relaxed in the shade of boulders midday and did some simple paintings. I was home by 6 and went straight to bed unable to move. My husband took care of dinner. It was just such a good reminder that with a little help I can have a rewarding and even beautiful life in spite oh high pain levels.
Today I have my Remicade infusion and am glad I have a ride there today, as it is almost an hour and a half drive each way. I hope to feel well enough to get my ribs put back into place today, because that would remove so much of my pain. 5th day on my migraine but its tolerable.
I have a huge week next week with the PTA. I have no less than three PTA meetings next week, book fair, Open House, and the Back to School Dance. Luckily I have a great team, but I still have to run the meetings and do my fair shifts on the book fair and dance. All that on top of work. At least its nearly week after from Remicade so the exhaustion from the meds should be worn off I expect.
Body awareness is a new thing for me. I got through most days by doing my best to ignore my body and the pain I was feeling. Having to keep a daily health journal and writing this blog is forcing me to become truly aware of my own body.
I think many people who are chronically ill do the same thing. We ignore the pain, and just push through, and I think that contributes to flare ups and exhaustion.
Knowing I have to be accountable to my daily journalling I wake up now and check in with my body, what hurts, and surprisingly for me, what doesn’t hurt. Today my legs felt shaking and weak and a bit achy, and I noted that, but also realized it wasn’t so bad, and let it go, but as I was checking in with the rest of my body I noticed not only did I feel no pain in my hands, but that they actually felt good. They felt full of energy and wanting to work. I think I may have been so eager to ignore my body because I didn’t want to focus on the pain, and I didn’t want the pain to stop me from living.
After three days of working shows I knew I would need today to rest, but when I checked in with my body what I found was not limitations, but opportunity. Today my hands work great! Today my brain feels clear and strong. Today I made a to do list of all the things I needed and WANTED to get done that I could rest my body while doing and let my mind and hands do the work.
I have a lot of computer work that I need to do for work, I have a painting to finish, some research to do, and some correspondences to follow up on, and appointments to make. Without being so aware of my body this morning I may have had a less productive day, than I now plan on having.
The hard part is to have body awareness without judgement. So I will need to learn to let awareness like “my legs hurt and feel weak” to be just that and not letting it snowball to “my legs hurt because I am a weakling and probably if I wasn’t chubby it would be easier to walk on these stupid, worthless legs”. I can think, “my legs hurt and feel weak” and then plan my day accordingly without guilt or judgement.
I noticed earlier in the week I was in a lot of pain, but I was working so hard to ignore it, all of me ached and I could hardly breath or move. It wasn’t until I took some time and really allowed myself to focus on the pain, and pay attention to my body that I realized one of the factors of my pain was that I had several ribs dislocated and it was impeding my breathing and adding pain to my already angry body. As soon as I realized it I went directly to a Chiropractor who was amazed I had let them get so bad before coming in. After, the rest of my body still hurt, but I could breathe freely and it took the pain level down a notch or two and I found I could think clearer. Who knows how long I could have gone without getting adjusted if I didn’t truly focus and become aware of my body.
I have a Scarlet O’Hara mentality of dealing with stress, “I mustn’t think about it today, I will think about it tomorrow”, and that has apparently fallen into how I deal with my own body and pain. Its time to become aware of how I feel, right now, and respect my bodies limitations and suggestions. Our bodies have message for us, we only need to listen.
I have no idea what this is called, and it doesn’t really apply to Psoriatic Arthritis, but it does apply in a direct moment to moment way to my life and the way I deal with my illness.
I have very keen senses. Sometimes its a gift. I can taste the nuances in a dish enough to replicate it and maybe even improve on it, I can taste and smell meat on the verge of not being good for me, avoiding many cases of stomach upset I am sure. I have a keen eye for color. I get great comfort over the sensation of softly woven bamboos and silks. At times I can feel the rain coming and even an earthquake as a physical sensation on my skin. Massage is very healing for me.
That being said it is also a curse. I can smell cat spray so strongly it can ruin a day lounging at the most visually beautiful pools I have seen, or animal urine can cause me to retch so badly I won’t do my laundry which is in the room with the cat box. Some colors will cause an uncomfortable physical sensation on my skin and almost make me feel sick. If I pay attention to detail I get obsessed, so if I clean all I see is more and more dirt, so I cope with this by ignoring cleaning. I have a hard time sleeping anywhere, as I have a princess and the pea syndrome where I am never quite comfortable even in a nice bed with soft pillows. I long for sheets and pillows and beds more expensive than my pocketbook allows. I have a hard time being satisfied with food without flavor, but will sometimes eat compulsively until I find the something that pleases my tongue, instead of my stomach. Sounds, lights, and smells can all give me a migraine. If a medication has a side effect I seem to get it, especially if its something like itching, or vision distortion. I can feel medication often going through my veins. My skin is over sensitive to a unbearable degree in certain places. I can’t stand to have my wrists or the veins in the back of my hand touched. Sometimes I wonder if the pain I feel is also amplified by this over sensitivity. I had ear inflammation a few months ago caused most likely by the audio immune and the roaring in my ear was impossible to ignore.
Sometimes something switches in me and my senses get even more acute. Often when I have an migraine or anxiety. At this point I can’t stand the smell of the dogs anywhere in the house, the neighbors weed wacker two blocks down makes me feel like screaming and I can not find anything in my closest comfortable enough to weary so that I don’t want to rip my skin off. I can feel and see dirt on my skin, my hair itches my shoulders, and I can hear my heart beating, and my own breathing sounds impossibly loud. Add pain to that and I feel like I am literally going insane. I can feel often where the pain is exactly, which ribs are dislocated, what joints are under attack, often pain deep deep in my bones, or right under the surface of my skin. Maybe this is where any obsessive compulsive behavior of mine originates from.
It is something I am going to have to start considering in my quest for health…ways to deal with this over sensitivity, or ignore it. I would love to hear from others, or any information anyone has on this.
I have been living with this illness long before I knew what it was. More than once I was afraid I was crazy or a hypochondriac because the doctors couldn’t find out what was wrong with me. I eventually found out I was suffering from several health issues, including chronic acid reflux, slipping rib syndrome (caused by a life time of coughing from the reflux), migraines and PsA.
That is quite a list just to tell people about if they ask what is wrong with me. It’s down right embarrassing. What is also embarrassing is the pity I see in faces if I do share. I don’t want pity, please. I want understanding. Sympathy isn’t necessary. This illness is serious yes, but its manageable, and I am a fighter, and I am not about to give in. Telling me I am in your thoughts, or you are sending me positive energy, or offering me a ride to the doctor, those things are absolutely lovely, and I welcome such gifts. Telling me you have your whole church praying for me, or that you are crying for me, makes me down right nervous. I have a great life. I just live with pain. I have some close friends with cancer who appreciate that I just treat them normal. It seems bizarre, how else would I treat them. But I get it, and maybe thats one reason I have stayed silent for so long. I LOVE support, I crave understanding, but I am a strong woman and pitying me will do nothing to nourish my soul, so I most graciously decline it.