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Holidays

  • By Suann

    The holidays are very hard for me. I use to love Christmas, I love the meaning behind it, that will never change but my whole outlook on Christmas is nothing like it use to be, I enjoyed making all the Christmas goodies, sharing them with whoever, the shopping and wrapping and the worries if they will even like the presents.. And Oh how I miss the days when we could pick and choose the presents for our loved ones. All the decorations in and out of the house.. I use to love it but now I only exist, I can no longer make the candies,stay on my feet long enough to shop nor can I wrap a present..Its just not fun anymore when u have to depend on someone putting up your tree and decorations..wrap your gifts u purchased online..I was diagnosed with psoriatic arthritis in 03 by a top specialist in Hilton Head SC.. Not only do I have the psoriatic I also have many other illness that are crippling so I live in constant pain day in and day out.. I have learned to tell the difference in the flares when I have one and like now I have 3 different flares going, the psoritic in my joints, the fibro in my muscles and the ra in my fingers and wrist.I also have osteoarthritis,lupus not to mention the secondary illness.. Treatments have stopped working for me, I take my predisone to get out of bed each day, I take my magnesium oxide and delsym to help block the pain receptors in my brain plus a few opiates that dont work, maybe they do, either way I live with chronic pain everyday of my life and its not fun.. I find things to do no matter how I feel, like cleaning a room or working my puzzles to reading on my kindle. I do find myself reading quite a bit,, I dont have answers to those who suffer with psoriatic or any other diseases, take one day at a time, rest when u need it, work when u can, sit back and let the world pass us by..Gentle hugs to all

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  • By CathyD Moderator

    Hi Suann,

    I’m sorry to hear about all of your health issues and how they are affecting you this holiday season. It can be very difficult generally, but holidays do seem to have a tendency to highlight our limitations more than usual don’t they? I’m so sorry that you are suffering, I hope you are able to enjoy Christmas in some way this year.

    Are you reading anything currently? I have just started A Christmas Carol – trying to get festive!!

    Thank you so much for sharing with us. Please lean on us anytime you need to – we are here for you. Sending you a big hug!

    -CathyD

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  • By linsule

    I was able to do the shopping online and in October. But now I’m barely able to get out of bed , depressed and just worn out physically and emotionally. I’m on Remicade and on the 8 week between infusions. However, my doctor saw me last week and decided that I should get the Remicade every 6 weeks and see if that helps with the aches in my joints, especially my feet.

    Linsule
    feeling terrible

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  • By CathyD Moderator

    Hey linsule,

    Thank you for reaching out to the community. I am so sorry to read that you are suffering, that sounds really tough and it can definitely drain you both physically and emotionally, as you say, when you are so unwell. Do you have a date for your next infusion? I hope the increase in frequency of them will bring you some relief. Please keep us updated with how you go, and best of luck!

    -CathyD

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  • By PattyJ

    I didn’t do hardly anything for the holidays other than contribute to the family Christmas dinner. I have been having renovations going on in my house since the end of October. I have tools, materials and dust in every part of my house except the attic and I have 7 rooms, 2 bathrooms and a basement and screened in porch. I knew I didn’t have the energy to deal with all that and Christmas too. I’m thankful my family understands as I have been dealing with PsA since 1979. I got a grant to help with most of the work that was being done to bring the house up to code. My brother has been helping with some updating in the bathrooms, some electrical, and some wood projects too. I usually help him a little and have to locate the materials and tools. I just got an infusion on the 20th of Simponi Aria and have a little more energy. My other symptoms are not too bad at this time. Thank goodness the work done by others should be done this next week. But I am faced with needing to deep clean the whole house by myself and painting all the woodwork. I do have someone come clean 4 hours a week, but they can only do normal household chores. I can’t be on my feet long at all and just since the beginning of September have started using a walker at home sometimes. I live alone so most of it is all on me. One of my renovations was to get a new ramp. I have plenty to keep me busy all winter and beyond. The trick will be to not get overwhelmed and realize that any progress is good enough no matter how small.

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    • By Rebecca Keymaster

      @pattyj contributing to the family dinner is a big deal! Happy to hear that you have a family who understands. That’s so important, especially since it’s hard enough.

      I’m curious – you wrote that you make it a point to get up no matter how you feel. How do you motivate yourself to do that on days where it’s the last thing you want to do?

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  • By PattyJ

    Suann, I’m glad you mentioned the positive things you find you can do. It makes all the difference in the world. I have realized the mental battle is as important as the physical one. As I find myself unable to do things, I just adjust my idea of fun. It is hard to stay positive when you feel so bad, but the more you do the better you feel. I have times when I have felt pretty bad when meds quit working so I understand.

    Linsule, I make it a point to get up no matter how I feel, even if it is only to lie down in the living room. I bought a chaise with an electric back that lowers down. It is excellent for naps or when I cannot get comfortable in my recliner. It crowds my room but is so very worth it! I find surrounding myself with bright vivid colors and clothing enhances my mood and helps a little with the depression. Go with colors you always love that feel happy and/or peaceful to you. I read up on coping with depression and seasonal disorder and use those strategies when I get a little too blue. Find a way to stay connected to people in person or social media. The more you can shift the focus off of yourself the better you will be too. Find ways to make adjustments to enable you to do some of the things you enjoy. I bought a walker with a seat so I could go to the annual street festival for the concerts. I use it for shopping too. I can sit while I compare or just browse. I have a lot of pain in my feet and knees too. It is amazing how many things I do sitting in a folding chair, like yard work, including using an axe, cleaning. Be creative and figure out what will make things easier for you and do it no matter how silly you may think it looks at first. Just don’t give up being who you are.

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