I am a new member to this group. Haven’t been active as much as I want to because I have been experiencing flare ups on & off—my biggest frustration right now is my husband doesn’t understand how I can feel good one day and then can’t get out of bed the next day! Just to be clear, he does know about my PsA, and most of the time he stands by me and is very supportive. But I guess with him working night shift full time & having to do most (if not all) for our two girls while I’m cooped up on the bed can get tiring! I guess my frustration is all on me! I feel like at 35years old I should be able to be more in our children’s lives. Our daughters are aged 15 (turning 16 in May) and 4 years old. Both so full of energy & I can’t keep up! My guilt is killing me! I feel bad but IF I can lift myself up out of bed EVERYDAY I would! I know I have to accept as each day comes but I’m just getting sooo frustrated! I wish there was a pill that would just make me Snap out of it just like that! Poof! All my aches & pains are all gone & my energy up to 100%! Oh why do I have to suffer like this! My mind is planning all these wonderful stuffs I can do with my family & how I want to fix up our home & be able to work as much as I can. But alas, I am only able to “Think” & “Plan” but unable to “DO” because I am in pain & feeling tired all the time! I just recentlt got replaced at work where I was doing in office work part time. Our agency is growing & they needed someone Full time to do what I do but I couldn’t commit to it Full time due to my illness. Some weeks I am only able to work 18-22hrs mostly I start after Midday til past office hours. Because my mornings are the worst time for me—I feel stiff & achy all over plus having difficulty sleeping makes it worse! Anyway. Sorry for the rant, just had to get it all out of my system before I explode! Thank you so much for this group! I come here everyday to read & learn & most of all to REASSURE myself that I am not alone in this battle & that my pain are real and not all in my mind! If I could hug all of you individually, I would…from the bottom of my heart, I thank you all for all the time & wisdom you so all willingly share to each & everyone in this group.
I feel exactly the same way! I am also 35 and have 4 kids, ages 13, 10, 5, and 3. My husband wants to understand but, like your husband, he doesn’t quite get it. I hope you find peace in knowing that you are not alone.
I hear you girls - snap to just about everything you say Just know that we are all pretty much in the same boat and all having our ups and downs. Feel free to rant on because we are the people who understand. Hope you and your Rhumy get things sorted for you soon <hug>
Hi there, I feel for you both…this disease is so unforgiving at times. Of course your partners get tired and also frustrated, my only advice on that score is to reassure your hubbies how much you appreciate how much they do for you and the family, and give show them how much you love them.
When I was alot younger and my boys were little I remember struggling with chores due to bad fatigue and looking back I realise this coincided with big Psoriasis flares. My husband was very good at making me feel worthless and guilty.
I’m lucky in the fact that my boys are grown up and I have a good partner now who was so used to “doing it all” in his past relationship that he is grateful for the times I am on top of things.
Do you get help from your family doctors? If you are newly diagnosed it often takes time to get back on your feet after finding the right treatment.
It is so hard to fathom why we can be relatively ok one day and in bed the next, but sometimes showing your partners some of the threads on this site might help.
I am currently signed off work since the 27th Feb, mainly as the fatigue has got so bad, I’m cross, tearful, feel guilty, am sleeping loads, struggling with everyday living, but I know it will get better, I will regain some energy…I always have in the end.
Thank you for sharing your feelings, as you say it helps reinforce the fact that we are all in the same sort of boat and we understand.
You are not alone. I have PsA and the insomnia is awful. Got sleeping pills which don’t take effect right away, usually 1-2hrs after I take them. Then I can sleep till noon. Recently decided to cut them in 1/2. Still 12 hrs later I wake and can’t be alert for anther 2 hrs! Today I found out there is a lighter dose that when I cut in 1/2 should hopefully let me sleep through night and wake up normal. Don’t know if it is the winter that wakes me up in pain at night or just PsA. It is now in neck and back but tomorrow shoulders or feet/hands. I was diagnosed 3 yrs ago but realize odd things I didn’t pay attention to we’re earlier signs. Everyone thinks there’s nothing wrong because we look ok but inside here is a war. My grown children and husband are quick to dismiss pain or stiffness and depression. Thank heavens my girlfriend and I support each other as she has RA and we understand each other really well!
You aren't ranting !!!! This is the place to talk it out. We are all here for you - 24/7.
Don't feel guilty! You need to take care of yourself. I'm an empty nester, but use to feel guilty about not getting things done around the house, not volunteering as much as I was etc. And if you've seen any of my posts, I've been struggling with terrible fatigue every day. And I just stopped feeling guilty and started taking care of myself, and said it's ok not to do all the stuff I use to do. If the house is messy so what, if I can't volunteer as much same thing - I've done a lot of volunteering and I just told one person at the animal rescue I work with about my condition and now I work as a sub for others, so I can say yes or no to task depending on how I feel. They told me they are just so grateful to have me donate any time at all. And I was feeling guilty for no reason at all !!! I also hire my contractor's son, who is in community college nearby to help me around the house to get certain projects done quickly to leave me time do what is important to me. He's not expensive and gets task done very quickly. I use him often. It's one of the best ideas I've come up with for myself.
You are a obviously a wonderful Mother who wants to take care of kids and spend time with them. Children care about being loved, not how clean their house was growing up.To me showing them how much they are loved is this most important thing and you can do that easily every day, but saying how proud you are of them, showing interest in their lives and simply saying "I love you" you are the most important thing in my life.
Just a suggestion, I would write a list of the most important things you want to do with them and save your energy for that. Can you hire someone to clean the house, or maybe get a friend to help you with your house? I'm one of those strange people who LOVES to clean and organize closets at other people's houses and have done it often - do you know someone like that?
I hope you will share your thoughts, ideas, feelings with us often. As we've said so many times here, we learn from EVERYONE'S postings.
I hope I don't sound like I'm telling you what to do - I'm just trying to offer helpful suggestions. Take anything that is helpful and leave the rest. You know what's best for you.
warmly,
Frances
I'm glad to read I am not the only one going through this. I tried explaining it to my arth. Dr. and he just said it's part of the deal, I don't know what to tell you. Needless to say I need to look for another dr.
I can no longer work either. I find it impossible to explain to my husband let alone employer what is going on with my body.
Hannah, we totally get everything you’re saying, and cruising around the board (as you’ve no doubt done) you’ll find loads of new friends who’ve been there, and even some who are right there right now!
Looking at your profile, it appears that you’re in The Gap: that period of time between diagnosis and finding treatment that works for you. Many of us have found The Gap to be the most difficult period of our illness. It gets better, really it does, when you find what works for you. Trouble is, it can take some time, as most DMARDs and biologics take a trial of several months before you know whether they are effective. You just have to be a patient patient!
Has your rheumatologist given you a diagnosis of PsA yet? If so, what’s the treatment plan? (It wasn’t clear from your profile … you said that your rheum was reluctant to diagnose you because you are only 35 and you have no nail changes. Well, this disease isn’t picky about age – there are adolescents who get this, bless their hearts. And about your lack of nail changes: what did you take the Lamisil and the fluconazole for? If it was for toenail “fungus”, did those meds work? If not, my guess is that what you’re seeing on your toes is psoriasis. The same happened to me.
As for the fatigue, please don’t minimize the effect of the fatigue when you are talking to your rheumatologist. It’s a really serious symptom that’s seriously playing havoc with your life.
Meanwhile, hang out with us. We get it, we really do.
Hannah I here you. You all in this group are the only ones who know how I feel. My husband doesn't, my kids, mom,family,co-workers and even my doctor doesn't know how I feel. I have been through the stages of grief forward and backward several times in the past few years-shock and denial, pain and guilt, anger and bargaining, depression,reflection,loneliness...ect-but every day it is still here and I am the one that has to deal with it. I am new to the group and sharing and reading other experiences is really helping. Thank you and God bless you all!
I took Lamisil and fluconazole to treat the Seborrheic Dermatitis that was also found in my biopsy together with Skin Psoriasis (mostly on my face & Scalp)My dermatologist felt he needed to address that as well to see if it helps & My rheumy said to try treating the dermatitis and maybe my Psoriasis gets in control that I will feel better. Rheumy only prescribed Nabumetone since I started seeing her last year as PRN only. She changed it to routine doses and now up to max dose of 3x/day and added flexeril due to having pain onmy lower back, left knee & foot pain. I see her again this week. I have missed our last follow up 2weeks ago. I was so fatigued & didnt have anyone to drive me to appt. She said she wasn’t still 100% convinced it’s PsA but I saw my records, she did put it there but did make a note that she is treating it conservatively due to no signs of swelling or deformities aside from my elbow which had been previously diagnosed as Tendinitis.
“The Gap” is new to me! so that’s what it’s called! at least I know I can always come to this group and find comfort knowing everyone knows how debilitating it feels no matter how much will power I have inside me. It’s as if I don’t own my body when fatigue hits! And when it comes with joint pains, it feels more like getting hit by a speeding truck! So thank you, thank you , thank you for this group and all your kind words and suggestions! once I am feeling better, I will reply to each and one of you! I come here to read everyday because it’s what keeps me going!
Seenie said:
Hannah, we totally get everything you’re saying, and cruising around the board (as you’ve no doubt done) you’ll find loads of new friends who’ve been there, and even some who are right there right now!
Looking at your profile, it appears that you’re in The Gap: that period of time between diagnosis and finding treatment that works for you. Many of us have found The Gap to be the most difficult period of our illness. It gets better, really it does, when you find what works for you. Trouble is, it can take some time, as most DMARDs and biologics take a trial of several months before you know whether they are effective. You just have to be a patient patient!
Has your rheumatologist given you a diagnosis of PsA yet? If so, what’s the treatment plan? (It wasn’t clear from your profile … you said that your rheum was reluctant to diagnose you because you are only 35 and you have no nail changes. Well, this disease isn’t picky about age – there are adolescents who get this, bless their hearts. And about your lack of nail changes: what did you take the Lamisil and the fluconazole for? If it was for toenail “fungus”, did those meds work? If not, my guess is that what you’re seeing on your toes is psoriasis. The same happened to me.
As for the fatigue, please don’t minimize the effect of the fatigue when you are talking to your rheumatologist. It’s a really serious symptom that’s seriously playing havoc with your life.
Meanwhile, hang out with us. We get it, we really do.
I understand exactly how you feel! You are not alone! Fatigue is not easy to shake off like most people think. I recently had to give up my desk job because they need to have someone full time (instead of part time) and due to my inability to commit to it, I had to give it up. I am not back on the field as a home health nurse doing visits. I feel depressed about losing my desk job that I’ve had for four years, but my boss explained and I understood that the business is growing and they need someone who can be there 8 hrs/day, 40hrs/week. I see my Rheumy again soon, but if I get nowhere with her, I think I will probably see another Rheumy.
ddashby said:
I’m glad to read I am not the only one going through this. I tried explaining it to my arth. Dr. and he just said it’s part of the deal, I don’t know what to tell you. Needless to say I need to look for another dr.
I can no longer work either. I find it impossible to explain to my husband let alone employer what is going on with my body.
Thank you! I am trying hard…I find solace knowing I have this group who knows exactly how I feel!!!
lesliiw said:
I feel exactly the same way! I am also 35 and have 4 kids, ages 13, 10, 5, and 3. My husband wants to understand but, like your husband, he doesn’t quite get it. I hope you find peace in knowing that you are not alone.
It’s called The Gap as of this morning. I just thought of it as I wrote that post, but I think it’s pretty descriptive, don’t you? LOL
Thank you Frances for you kind words and suggestions! And no, it didn’t sound like you were telling me what to do. It was all helpful! Well,we migrated to the US when our eldest daughter was 4 yrs old. Had moved several times so my life mainly revolved around my husband and children so I really had no friends that I can turn to. Plus I have had fatigue for several years even before I was diagnosed with Skin Psoriasis & PsA so I was never really outgoing enough to have my own circle of friends. My cousins are supportive of me, but they too have their own lives and I can’t always depend on them. I do have my list of what my children wants to do and am trying to make ways to make it come true. This past New Year’s celebration, we were in Los Angeles for the holidays, we had planned to go to Disneyland with our daughters as our little one who’s 4 now have been asking to go( she had been there once when she was 2 but too young to remember) But I ended up needing to go to ER on Jan 3 due to severe back & neck pain and didn’t get discharged til past midnight. So we cancelled Disneyland as I couldn’t go and they didn’t want to go without me. My goal now is to have enough energy to take our children to Disneyland this summer and not have to cancel. I am blessed that our eldest daughter who is almost 16 helps a lot around the house. She also helps a lot with her little sister. They are 14years apart and so she had really longed for a younger sibling for so long and really adores her and loves spending time with her sister. Our house is ok, messy but clean. When I have good days, I scrub all the bathrooms & kitchen. so house cleaning is not a problem, my husband cleans as well…he also does all the cooking.
And yes, I never miss a chance to tell my family how much I love them!
Sincerely,
Hannah
Frances said:
You aren’t ranting !!! This is the place to talk it out. We are all here for you - 24/7.
Don’t feel guilty! You need to take care of yourself. I’m an empty nester, but use to feel guilty about not getting things done around the house, not volunteering as much as I was etc. And if you’ve seen any of my posts, I’ve been struggling with terrible fatigue every day. And I just stopped feeling guilty and started taking care of myself, and said it’s ok not to do all the stuff I use to do. If the house is messy so what, if I can’t volunteer as much same thing - I’ve done a lot of volunteering and I just told one person at the animal rescue I work with about my condition and now I work as a sub for others, so I can say yes or no to task depending on how I feel. They told me they are just so grateful to have me donate any time at all. And I was feeling guilty for no reason at all !!! I also hire my contractor’s son, who is in community college nearby to help me around the house to get certain projects done quickly to leave me time do what is important to me. He’s not expensive and gets task done very quickly. I use him often. It’s one of the best ideas I’ve come up with for myself.
You are a obviously a wonderful Mother who wants to take care of kids and spend time with them. Children care about being loved, not how clean their house was growing up.To me showing them how much they are loved is this most important thing and you can do that easily every day, but saying how proud you are of them, showing interest in their lives and simply saying “I love you” you are the most important thing in my life.
Just a suggestion, I would write a list of the most important things you want to do with them and save your energy for that. Can you hire someone to clean the house, or maybe get a friend to help you with your house? I’m one of those strange people who LOVES to clean and organize closets at other people’s houses and have done it often - do you know someone like that?
I hope you will share your thoughts, ideas, feelings with us often. As we’ve said so many times here, we learn from EVERYONE’S postings.
I hope I don’t sound like I’m telling you what to do - I’m just trying to offer helpful suggestions. Take anything that is helpful and leave the rest. You know what’s best for you.
warmly,
Frances
Hannah, I am so sorry you are having such a tough time with PsA. I like to describe it as a sneaky little monster. One day you are relatively fine, the next day, or week, or month you are in misery. I have been in an active, uncontrolled flare for 4 years - one that hit just after I married my current husband (SURPRISE! You married a type-A personality with the ability to get multiple tasks done with panache. Now she's turned into a couch slug!) Let me apologize in advance for the novel I'm about to write in response.... :)
I am what people refer to as a "doer." All my life I've been the first person to volunteer to do the ugly jobs no one else wanted to. I was the CEO of a nonprofit organization, working 80-120 hours a week, a single mother of two kids (one of whom is medically disabled), and I went to grad school and got my Master's Degree all at the same time. I went on mission trips to third world countries to build latrines and houses and help with whatever needed to be done. I look back on it now and wonder how I managed it - even without being in a flare. It's likely all of that is what created or contributed to this mess I'm in now!
Now I'm lucky if I can make dinner AND wash the dishes. Doing both of those things on the same day is a major accomplishment for me! My husband and kids are usually incredibly supportive and loving, but they also get frustrated when I can't do the things that I did before. The tables have turned, and now it is my hubby who is working 12-15 hours a day 5 days a week, 8-10 hours on Saturdays, and sometimes on Sundays (and is on call 24/7). The major difference is that when he gets home from work, dinner is usually ready so all he has to do is sit down, eat dinner, relax for a while and then go to bed. We just moved into a larger house so his mom could move in with us, and I find myself not only frustrated because I can't do everyday chores (we've been here 1 1/2 months, and I still have scads of boxes of my own to unpack, let alone my mother-in-laws stuff), but also BECAUSE he comes home, eats dinner, relaxes for a while, then goes to bed - and doesn't even pick up his own socks or dirty dishes. Then, of course, I feel guilty for getting frustrated. Any day he has off work he spends moving furniture and heavy things, reorganizing what has been unpacked to make room for what needs to be unpack...I just feel like a mean, grumpy harpy most of the time.
Sometimes, thinking and planning are the most important step for getting things done. I have found that if I figure out where everything needs to go or what needs to be done, and can break it down into small, manageable steps, my teenagers (with the attention span of gnats) and my husband (also with the attention span of a gnat - ADHD all around) can get quite a few things done without realizing I've cracked the whip to get them going. I've found that once those tasks are broken down into manageable steps...even I manage to get quite a few things done that I wouldn't have realized I could do. It just takes a shift in our thinking paradigms. Anything that requires heavy lifting, bending, standing, walking, all of those things I can't do, I sneakily assign to one of the guys - one microtask at a time (it takes a lot of energy to make it look like I "just thought" of something else that needed to be done, but it works). Anything I can do sitting down without too much stress on ouchy joints (including my back) I assign to myself. If we are all working on small steps at the same time, stuff gets done because we are all working toward a common goal of getting one major task finished. And then I go and take a nap. :) Does it take longer than it used to when I was Wonder Woman and could do and did everything? Of course it does. Is there still a sense of accomplishment when we get things done, even if it takes longer? Yep.
I truly do understand the downward spiral of depression and chronic pain and sleeplessness. They all feed on each other until getting out of bed seems like it takes too much energy. Add in the crappy side effects of meds, and it is a perfect storm of misery. But the critical key here is to get out of bed anyway. Even if it means taking two steps to sit in a chair for another 3 hours. The simple act of getting (somewhat) vertical helps shift some of that fatigue and depression to a different part of the brain that doesn't get quite so overwhelmed. Find a task or a hobby that you CAN do - I shifted from jewelry making (too many tiny beads that my fingers can't work around) to finding and creating yummy easy to make (and PsA friendly) recipes for dinners. My family are all happy to be my guinea pigs, and I may just put them all together and write a cookbook some day. Having short. medium AND long term goals is important.
Now, feel free to completely disregard everything I just typed. It is perfectly okay, and will not disturb me in the least. All I can do is explain how I make living with PsA work for me. It may be, and should be completely different for you because we are different people. But find what works for you (keep in mind it has taken me 4 years to get to this point), and go with it. Most importantly, give yourself a break. Throw out all the antiquated notions of "parenting" and "being a spouse" that society has foisted on us, and realize that PsA does not take away the unconditional love, respect, and caring that you have for your family. You just get to show it differently. In many ways, your kids will look back when they are older, and realize just how hard you worked at making them feel special and loved, and isn't that really our first priority?
I have been in your shoes and I know how you feel as do most of us here. For a long time I had a different screen name that I thought fit my personality better. It turns out I was wrong. This disease can drive you crazy but YOU ( the individual) are not crazy. All I can say is be true to yourself and hang in there, keep ranting to the folks here on the website, that's why they are here and learn everything you can about how to cope from day to day. Then TAKE A DEEP BREATH AND SMILE .... it won't change anything but your attitude :) now - LOL because some days that's all you can change.
When it get's really bad for me I try to remember, my family just wants the old me back as much as I do and they are having the same difficulties accepting the new me as I am. Everyone here has already accepted that me (CL) and I am moving forward with my life again with the help of these great friends and allies... so dive in and make some new friends. We are happy you found this site!
After reading your post and all the responses, I was thinking of what I wanted to add and realized maybe I should just post "me too" after every single reply. I don't always take the time to post on this site but I do read it. But this thread hit me so hard that I had to take the time. I'm so sympathetic to how you feel and it means so much to me to know I ALSO am not alone. I have had signs/symptoms of PsA for 5-6 years but I have never had skin psoriasis. Because of that it was so difficult to get diagnosed. Not every case has clear psoriasis involved. Finally a year ago, by process of ruling everything else out and giving up pints of my blood for lab work, I was given the PsA stamp. It has been so hard for me to accept and because of that I am still in the "gap" (new buzzword haha) long after I should be. I started Humira then stopped because of surgery and infections and I still haven't started it again. I spent months avoiding the follow up appointment with rhuemy to start meds and I have hesitated with each med. I just can't seem to get myself to believe that I need the drugs and that there really is something wrong with me. My pain is always in my right knee. For a year it was left knee but has been right knee for 2 years now. It swells a bit but not enough for me to say "Oh my gosh look at my knee!" so I feel like its not that bad. BUT it hurts with every movement. If I keep it still it doesn't hurt, therefore I tell myself "well just don't move it and grit your teeth when you do". There are other things wrong like eye problems and toe / foot pain that have been easy to blame something other than PsA. Now I'm learning, much of it from this site, that its all related. In bed at night I do not sleep. I've come to think of my bed as a torture device which doesn't make my husband very happy! I toss and turn and the things I've done all day seem to gather right above my butt cheek and shoot down pain down to my knee and ankle for hours. If I manage to relax I get a jerking spasm. I can deal with being sleepy, but the fatigue is unbearable. In my opinion if you are sleepy that implies you can sleep and feel rested. If you are fatigued, you are not just sleepy but your mind and body are not able to respond to the littlest thing you ask it or will it to do. I am just turned 49 but am used to living as if I was much younger... ok so I don't act my age! I have a son and a daughter, ages 22 and 20 who both still live at home and have problems both medical and legal, I have a 7 year old son, a husband 10 years younger than me, a house made for a big family thats too much to clean, a puppy and 2 cats that I love and that try to destroy my house daily! I work for a busy surgeon in a large medical facility and my husband and I have our own business that is his full time work and I do all of the accounting, billing, taxes etc. Of course I have no time for that and have to keep my other job for the health insurance. So that's my "I feel sorry for myself" outline. This is my life that I made for myself, I chose this path and I loved it, I'm happy when I'm super busy, I love my jobs, my kids and my animals. What I didn't count on was the fact that I could stay in bed for 2 days easily and hit a wall everyday long before I'm done with everything. I have to will myself to get up daily even when I've had 11-12 hours sleep, well not sleep, but tossing turning and some sleep etc. I hate it and I hate coming home in the evening and feeling like I can't do anything more. I sit down to work on our books and I have no energy left! My husband knows the drill about PsA and I have had him read posts on this site, but he still gets so upset with me over staying in bed too long or being too tired to go to dinner or shopping. He can jump out of bed running after 6 hours sleep. I take slow painful steps to the shower and consume tons of caffeine to get moving. I feel so guilty and so depressed over this. I just don't bring up my pain and PsA anymore because it's been long enough that it's kind of ignored, old news now. Because I don't have constant flares, rather I have constant low level pain that's just low enough for me to still attempt to do everything and look ok doing it, and I have worst pain at night when everyone is asleep, and huge debilitating flares only a few times a year, it's just too easy for me to say "this isn't real and it's in my head and I'll just work through it. I know this sounds crazy and stupid but sometimes I wish I either had PsA symptoms obvious enough to show I need help, or of course even better not having it at all. Working in surgery I think I need to see a wound or a clear cut lab result to believe that I need medical care. Even on this site I read posts and feel so sorry for others that are much worse off, that I feel like I shouldn't be complaining. I'm sorry for getting off on my own rant but I hope my story will add to the others and help you and me both realize we are not alone. Oh yeah... and that we are not crazy! :-)
Thanks for sharing your story here madseason! i am new here as well and this was my first post here, but like so many, I have been reading here everyday. I just had to let my feelings and frustrations out as I felt like I was about to explode! And no, you were not ranting… I really appreciate your time sharing because it’s one more reason for me to believe I am not alone in this. I don’t usually share my pain with anyone personally because even if my coworkers are nurses and my family are in the nursing & medical fields as well, I have felt how indifferent they are with my illness,esp when I verbalize my pain & fatigue… because I am only 35 & look well on the outside. And yes, you are right…we are not Crazy or Lazy & we are not hypochondriacs! Like I have previously commented, the pain & fatigue often makes me feel like a speeding truck just ran me over!( I have never been ran over by a truck but I think I know how much it will hurt) sometimes it even feels like that truck decided to park right on top of me (after running me over) and those are the days that I “lie” in bed for hours–even struggle to get up to use the bathroom because I hurt and I have no energy! I am newly diagnosed, but the symptoms I have are things that I have felt for years! now it just has a “Name” but haven’t quite reached the stage that I have treatments that work. So hopefully, I get new treatments when I see my rheumy again.
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madseason said:
After reading your post and all the responses, I was thinking of what I wanted to add and realized maybe I should just post “me too” after every single reply. I don’t always take the time to post on this site but I do read it. But this thread hit me so hard that I had to take the time. I’m so sympathetic to how you feel and it means so much to me to know I ALSO am not alone. I have had signs/symptoms of PsA for 5-6 years but I have never had skin psoriasis. Because of that it was so difficult to get diagnosed. Not every case has clear psoriasis involved. Finally a year ago, by process of ruling everything else out and giving up pints of my blood for lab work, I was given the PsA stamp. It has been so hard for me to accept and because of that I am still in the “gap” (new buzzword haha) long after I should be. I started Humira then stopped because of surgery and infections and I still haven’t started it again. I spent months avoiding the follow up appointment with rhuemy to start meds and I have hesitated with each med. I just can’t seem to get myself to believe that I need the drugs and that there really is something wrong with me. My pain is always in my right knee. For a year it was left knee but has been right knee for 2 years now. It swells a bit but not enough for me to say “Oh my gosh look at my knee!” so I feel like its not that bad. BUT it hurts with every movement. If I keep it still it doesn’t hurt, therefore I tell myself “well just don’t move it and grit your teeth when you do”. There are other things wrong like eye problems and toe / foot pain that have been easy to blame something other than PsA. Now I’m learning, much of it from this site, that its all related. In bed at night I do not sleep. I’ve come to think of my bed as a torture device which doesn’t make my husband very happy! I toss and turn and the things I’ve done all day seem to gather right above my butt cheek and shoot down pain down to my knee and ankle for hours. If I manage to relax I get a jerking spasm. I can deal with being sleepy, but the fatigue is unbearable. In my opinion if you are sleepy that implies you can sleep and feel rested. If you are fatigued, you are not just sleepy but your mind and body are not able to respond to the littlest thing you ask it or will it to do. I am just turned 49 but am used to living as if I was much younger… ok so I don’t act my age! I have a son and a daughter, ages 22 and 20 who both still live at home and have problems both medical and legal, I have a 7 year old son, a husband 10 years younger than me, a house made for a big family thats too much to clean, a puppy and 2 cats that I love and that try to destroy my house daily! I work for a busy surgeon in a large medical facility and my husband and I have our own business that is his full time work and I do all of the accounting, billing, taxes etc. Of course I have no time for that and have to keep my other job for the health insurance. So that’s my “I feel sorry for myself” outline. This is my life that I made for myself, I chose this path and I loved it, I’m happy when I’m super busy, I love my jobs, my kids and my animals. What I didn’t count on was the fact that I could stay in bed for 2 days easily and hit a wall everyday long before I’m done with everything. I have to will myself to get up daily even when I’ve had 11-12 hours sleep, well not sleep, but tossing turning and some sleep etc. I hate it and I hate coming home in the evening and feeling like I can’t do anything more. I sit down to work on our books and I have no energy left! My husband knows the drill about PsA and I have had him read posts on this site, but he still gets so upset with me over staying in bed too long or being too tired to go to dinner or shopping. He can jump out of bed running after 6 hours sleep. I take slow painful steps to the shower and consume tons of caffeine to get moving. I feel so guilty and so depressed over this. I just don’t bring up my pain and PsA anymore because it’s been long enough that it’s kind of ignored, old news now. Because I don’t have constant flares, rather I have constant low level pain that’s just low enough for me to still attempt to do everything and look ok doing it, and I have worst pain at night when everyone is asleep, and huge debilitating flares only a few times a year, it’s just too easy for me to say "this isn’t real and it’s in my head and I’ll just work through it. I know this sounds crazy and stupid but sometimes I wish I either had PsA symptoms obvious enough to show I need help, or of course even better not having it at all. Working in surgery I think I need to see a wound or a clear cut lab result to believe that I need medical care. Even on this site I read posts and feel so sorry for others that are much worse off, that I feel like I shouldn’t be complaining. I’m sorry for getting off on my own rant but I hope my story will add to the others and help you and me both realize we are not alone. Oh yeah… and that we are not crazy!
Great response, Frances. Sorry you don't live near me: I'd call you to come help organize closets!I am an about to be empty nester. I go through intense periods of guilt re/ the fatigue, and I have a very understanding family all around. Right now, I'm dealing with guilt about my dread of one last final college-decision trip this weekend which involves 5 hours of driving each way within 36 hours----I can do it, but it is exhausting. My husband could drive my daughter on his own, of course, but she would be a bit late for part of the visit function because of his work schedule. I hate making decisions like this one: where I have to choose between disappointing a child and inconveniencing my husband, and my own.....fatigue and illness stuff. (I am also only a week and a bit past a bout with shingles: more fatigue!)
Usually my desire NOT to disappoint or inconvenience trumps my own wishes.....
Frances
Madseason: I totally understand where you are coming from, but remember: fear the disease, not the treatment (thank you, Seenie!) Even though you feel as though your PsA isn't "that bad," you have the potential to have significant damage to joints while you are in denial of needing the meds. I'm not saying this to be mean - not at all! I am just saying that you need to balance your mobility/pain level/fatigue now against what it is likely to be if you don't treat the disorder. I went through a pretty long period of time where I chose not to take the meds...and here I am in a 4 year long flare with no end in sight. Please, please, please learn from my mistakes and get into the doc and start taking those meds religiously.
Megster: If I have learned anything thorough this journey, I've learned that taking care of you absolutely HAS to come first. I've taken the road trips knowing it was a really bad idea, and wound up suffering for it for weeks. Disappointing your child is heartbreaking, but I would bet if you asked your daughter, she would much rather you be healthy and mobile than take the risk of causing you more pain/damage. Also, having just gotten over shingles, your immune system is still in bad shape. You really cannot afford the potential to get sick again. Just recently my husband's grandmother died, and rather than risk getting sick and/or having my flare get even worse, I sent my husband, his sister, and their mom off to the funeral without me (in a different state). I felt terrible about not being there for people I love very much, but I knew that the trip could potentially have put me in the hospital, and that would have been harder for them to cope with on top of dealing with the grief from the funeral. Can your husband get a few hours extra off work to take her? I know that isn't an ideal solution, but it is a solution that will alleviate some of your guilt, get your daughter to the college on time, and keep you from putting yourself at risk. Sometimes we have to make the decision to accept the most benefical alternative, even if it isn't ideal.
Good luck and hugs to both of you.