Five things I took for granted before my illness

Five Things I Took For Granted Before My Illness

After being diagnosed with psoriatic arthritis, I expected to experience some level of physical pain on a daily basis. I also expected that I would have to make some changes to how I lived. What I didn’t expect was to spend the rest of my life struggling to do things that never used to take much thought or effort. Here are five things that I used to do effortlessly, but have become exhausting activities.

1. Bathing: Taking a shower or a bath is a major activity. Climbing in and out of a bathtub or standing in the shower increases my pain level. The stream from the showerhead often makes me feel like I am being pelted with hail. While I can avoid that sensation with a bath, the hardness of the porcelain puts pressure on my bones making it impossible to get comfortable.

2. Brushing and styling my hair: Some days the pain I experience in my hands makes it impossible to hold a hairbrush, let alone run it through my hair. Even on a “good” day my hands may go wonky causing me to lose my grip on my curling iron. I have burnt my forehead, ears, neck, chest, and even my stomach after losing hold of one. “Doing” my hair is not something I am able to do on a daily basis and why I often look like a troll.

3. Driving: Gone are the days of driving wherever I want whenever I wish. Driving increases the pain I experience in my hips, knees, ankles, spine, shoulders, neck, and hands. I used to be able to drive all day without any repercussions. Currently driving more than a few miles is a form of torture.

4. Shopping: I used to spend hours at the mall going from one store to the next or searching for treasures in thrift stores. Those outings are now too painful to do unless I use my wheelchair or walker. Sounds like an easy solution, but it is not. I have yet to enter a clothing or thrift store that provides adequate aisle space for a mobility aid of any kind. This is why I do most of my shopping online, which is convenient, but not as fun as sifting through a rack of clothes.

5. Hugs and handshakes: I began avoiding physical contact with people soon after my diagnosis. Depending on the other person’s grip a handshake may cause my bones to feel like they are breaking or my skin might feel like it is being ripped. Hugs hurt my back, shoulders, neck, and arms and are reserved for those I cherish.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (15)
  • victoriafinney
    4 months ago

    I’m off for a hair cut at the end of august. I think I will get a nice geometric undercut bob. I can’t raise one arm for more than thirty seconds so I need a cut that is easy and quick to brush and requires no styling. Luckily for me I have very straight hair naturally so I don’t need to use irons on it. Right now it is grown out and quite long. I don’t look like a troll because my wonderful partner will brush if I can’t but I would rather not rely on him. I’m an independent person and am trying to find ways to do as much as I can alone.

  • smiley1813
    7 months ago

    I understand totally, I have PSA and two years ago I gave up driving, because it was too painful to drive. It was a very hard decision for me to make. I also had to learn with in the last four years how to do things differently and just take it day by day. Within that four year period I have gone on SSDI, due to my PSA.

  • catgirl
    9 months ago

    One of the biggest obstacles for me has been to continue working a 40 hour week. I have to drive 45 minutes each way every day. I would go on disability ( I’m certain I qualify ), but my job supplies health insurance for both my husband and myself. Thankfully it is an office job but it is also very stressful. I have been on a walker for several years now and basically can’t walk without it. I use to refuse to ride those carts in stores, but now I don’t care who might see me. As I look back to what my life use to be, I realize how I took simple things for granted. Things like showering without a stool to sit on, cleaning my house and cooking for the family. If I could have one wish it would be a day without pain. I honestly can’t remember how it feels to be pain free.

  • stickywicket60
    10 months ago

    putting this out there tosee if anyone has any suggestions. I have a job of which I work four days a week. it is a strenuous job andphysically challenging. my supervisor works with me because she understands I have certain limitations. the company is now starting an eight times late/absentee program that if this happens eight times within a 6 month period you are automatically terminated. because of this condition, there are days, like today, for example, that I just do not function. and had to call off. sometimes I just need an extra hour or two to get myself physically going. but this will not do me any good with this new program. my manager and I talked about getting the doctor to write something up for me. has anyone had to do this? and does this sort of thing hold up? it’s been a lifetime trying to get the disability to go thru so I still have to go to my job inorderd to survive and pay bills. any ideas out there???

  • CathyD moderator
    9 months ago

    Hi @stickywicket60, this sounds like a difficult situation. I am glad that your manager is trying to support you in this. I think getting a doctor’s note would be a good idea. Additionally it may be worth looking into the Americans with Disabilities Act – this states that employers should make reasonable accommodations for those with disabilities, in order to enable them to do their job. Reasonable accomodations can include flexible work schedules. Hopefully someone who’s been through this too can stop by and share with you. I hope this all works out for you. You’ll be in my thoughts!

    -Catherine, Community Moderator

  • stickywicket60
    10 months ago

    i also have trouble with buttons, and shoelaces and tucking in shirts very painful and I find myself now looking for easy open tops as compared to twist off thiings.

  • imschmarte
    10 months ago

    Wow! Have to agree with all of them! Just driving today to the rheumatologist and home was agony! Showers are tough, and if I got in the bath, they would have to get a crane to get me out! LOL Shopping I think is the worst, have started riding the mobiles lately, but I always feel people are looking at me and asking, “why is she riding? why can’t she walk” because they can’t see my disability. Thanks for posting this, so nice to know we are not alone!! I guess misery DOES love company! LOL Keep fighting, we have no choice!!

  • Sonoftadpole
    10 months ago

    Wow! This really hit home on so many levels! The driving part, shaking hands, shopping and bathing examples! It’s maddening sometimes! In fact , there are more days I’m finding myself wanting to curl up in a ball and not move or interact ….partly because of pain ..partly due to exhaustion and partly that Sometimes im tire of fighting this..it gets old! When I look back over my life for 30+ years I see so many disruptions because of P & PsA..I see so many plans dictated to because of … thanks for the words of insight and for allowing me to vent!

  • Eurotrekker
    1 year ago

    Karen, I understand completely. I had to finally get a bench to put in my bathtub, because it was too hard to get up and out of the tub. Plus, my legs would tire during a shower. I also got a shower head that I can hold in my hand, so I can direct the stream to the points of my body that need the stream and can adjust the spray. As for hugs and shaking hands, most of the times I’m ok. However, especially at church, people want to shake hands. When I’m having one of the days where hand shaking is painful, I wave when I see them coming. Since they know of my condition, most just wave back.
    When driving, I must stop frequently and stretch. Also, wrapping my legs helps. I also don’t think I could function without my heated seats and the auto-adjustable seats. The heat seens to relax my back and every so often I just gradually adjust my seat, just to change the position again.
    For hair styling, I’ve gone with short hair, though I still use a curling iron. However, there are days I can’t raise my arms high enough to comb my hair. Those are a ‘stay at home and ignore vanity’ days.
    As for shopping, I make a list before I go and only try to go to small stores, so there is less walking in the store and in the parking lot. I have become a fan of Amazon and Jet.com to buy items and have them delivered to me.
    I realize it is a true pain having to adjust our lives. It’s very frustrating not being able to do what you were able to do and to see people your age, or even older, running circles around you. However, try not to be too hard on yourself. Do what you can, when you can. Then don’t beat yourself up when you’re having a bad day. If there is anyway you can get to a pool, have found it is the only exercise I can do. I don’t even swim much, but the the resistance ‘weights (foam), to do pool exercises. The water takes the weight off of your joints, allowing freedom of motion. I almost feel normal in a pool. By the way, I have a figure of Shamoo, but you know…. It doesn’t matter.

  • karenm
    2 years ago

    Thank you for so clearly articulating this list. Yup, yup and yup. Many years ago, when iagnosed, my kids were three and eight. Everytime we crossed the street, I held their hands and tried not to wince…you plow through as best you can. While i am so sorry for your on-going challenges, i really appreciate knowing I am not alone with these issues. It all become little less crazy-making.

  • CathyD moderator
    2 years ago

    You are definitely not alone in this, karenm. We are here for you!

    – CathyD (Psoriatic-Arthritis.com team)

  • PattyJ
    2 years ago

    I use a seat in my shower because it is so tiring to stand. You might want to try a different shower head that will allow you to adjust the pressure of the stream. Change your hair style to a brush and go look. How it is cut and the amount of maintenance you can or are willing to do is something that your beautician should be able to accommodate. My daughter is a beautician and knows I want a cut that requires no hair product and just a quick brush through.

    I can still drive without problems until I get out and have to try to walk after a long trip. I enjoy thrift stores as well. I have used a walker with a seat and parked it in the aisle while looking in little nooks and crannies and then go back and sit for a rest. But it isn’t as much fun as it used to be. I have had times with my hands that I just refused to shake hands and explained that it was too painful so as not to appear rude.

    I want to encourage you though. Even though there is no cure, the symptoms do not always remain constant. It changes, goes into remission. Things I was not able to do or found really difficult changed and I was able to do much more easily again. I had four months when I could not touch my finger to my thumb. It’s not a problem at all now. But it is crucial to be as aggressive with managing your symptoms and preventing flare-ups as your body will allow.

  • Casey moderator
    2 years ago

    Hi PattyJ!

    Thank you for taking the time to share all of that wonderful information with our community! I just wanted to let you know I enjoyed reading through and learning about all of the positive steps you have taken towards finding relief. Your words of encouragement are so uplifting, and I just wanted to thank you again for being a member of our community!

    Please continue to share with us, we’re all here for you!

    Best,
    Casey, Psoriatic-Arthritis.com Team

  • AtomHeartMother
    2 years ago

    So agree! It amazes me I can do my hair fairly easy with good results, UNTIL…I have plans and desire (which is rare!) to go somewhere!! Then, forget it…end up looking like a freak! By then I’m so sore and fed up, I stay home!! Thanks for sharing something most of us empathize with, and either laugh or cry. Either way, it’s OK, we’re allowed to feel our feels!! ❤️

  • Cynthia Covert author
    2 years ago

    Oh my goodness, it is so nice to know that I am not the only one who experiences good hair days when I’ve got no where to be and suffers from troll hair when I do. Hugs!!

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