How do you balance being sick and work?

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afidz

afidz

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So much has changed in the last month, so I know that my body is just trying to get used to change, but I wanted to hear from other people. I will give a little back groud and explain what I am going through right now to see if anyone can relate and offer advice.

I got fired from my last job almost 4 years ago. Since then, my health has declined. I was diagnosed with AS about a year ago, as well as inflammatory arthritis (from having Crohn's). I was put on Remicade, and that was my miracle drug. The AS was under control, I was able to be more active. So I have been trying to go back to work since April. I have had a few jobs that in the end just didn't work out. I just started my new job, tomorrow marks week 5. Last week, as some of you have read, I had a severe allergic reaction to Remicade. So I am pretty miserable because there is nothing protecting my body from my immune system. My back kills, my stomach has been kind of upset and I am exhausted, all the time.

I know I am still getting used to working. I am so much more active than I have been in a very long time. I am hoping that eventually my body gets used to the increased activity. I don't know what I am going to do if it doesn't get easier. By the time I go to bed at night I am literally crying in pain. My back hurts, my legs cramp and spasm, my chest hurts and I can't breath.

I need advice, tips and tricks. How do you guys deal with balancing work and sickness?
 
Afidz, have you done anything like physical therapy for the arthritis? That's what really helped me, although I don't have AS (I do have inflammatory arthritis). I also keep a portable, microwaveable heating pad at work for when things are achey or painful.

Do you know the cause of the leg cramps? It could be something along the lines of dehydration or low potassium. I have borderline-low potassium, and it's apparently quite easy to lose potassium through things like sweating. So my feet/toes will cramp up pretty badly when it drops too low. When's the last time you had bloodwork done? And what supplements are you taking? I presume you're drinking enough fluids to keep hydrated?

You also mentioned being exhausted all the time - so on that subject I also have to ask, have you had your vitamin levels checked recently? I recently had a bout with very low iron levels which made me super exhausted all the time. Now that my levels are up, I feel so much better and more energetic. If your exhaustion is due to a vitamin deficiency, that should be pretty easily treated too.

I work full-time too so I know it's really, incredibly tough some days. I think you've said that your company is really understanding and accommodating for your illness? That goes a long way all by itself. Other than that, little things I do to get through a workday - I keep safe snacks on hand at all times in my desk drawer. I make sure to have a big bottle of water so that I can stay hydrated. I keep booty cream (calmoseptine) in my purse in case I need it. Sometimes if I'm feeling achey or stiff and I can leave my desk for a few minutes, I walk around the building and that helps my joints feel better. I keep a sweater at my desk in case I get the chills. I always have Zofran on hand in case I get nauseous (my purse is like a mini pharmacy, ha ha). Just, basically, I am prepared for my body to throw some ickiness at me.
 
Are you asking me or Afidz? I can't take iron supplements but I just finished a series of 3 iron infusions.
 
What sort of vitamin supplementation are you doing currently? I agree with regards to energy levels you might want to get vitamin levels checked. Make your doctor aware of your low energy levels. Knowing a bit about your situation already you might want to especially ask your doctor about testing your iron and b-12 levels. Also, consider your diet and what you are putting into your body. Given our bodies are already in a sensitive state, diet has a great impact on energy levels as you go about your day. If you manage to clean up your diet for an extended period of time and then try to eat something processed or sugary, you will notice this impact on our energy levels more easily.

One other thing is to pay attention to your self-care methods. How much time are you spending giving your mind and body the attention and rest that it needs? It may be difficult given your situation but if you can choose to make time for yourself in that way you might also find an increase in energy endurance over time.
 
For the inflammatory arthritis 50% is meds 50% is physical activity
Warm water swimming is best -it there a gym near work
Electric heating pads
Tens unit attach to you lower back and tummy really helps DS cope daily
Sorry about the allergic rxn
DS had two episodes to remicade

Tagging Maya142
 
Both my daughters have AS and it really sucks!! My older one had a very hard time balancing just a part-time job when she was flaring (she was a teenager then). We use heating pads (electric and microwaveable), ice, a TENS unit like MLP said (our pain management doctor prescribed one) and pain meds when necessary.

PT or some sort of physical activity really helps. PT/OT might help you find stretches you can do before work and help you figure out ways to get through work. Swimming really helps my girls - even just being in the water helps, if you can't really swim yet.

Do you see a pain management doctor? If not, I recommend seeing one. They often have ideas besides pain meds, and if you do need pain meds, then they can prescribe some to get you through this flare. They can also do steroid injections into your SI joints or hips which might give you some temporary relief.

Do you know what med you will try next, since you can't be on Remicade?

Sending hugs!
 
Hi Afidz
Long time no speak. I'm sorry to hear you're suffering so much at the moment, and grappling with a new job (that sounds like one you want to keep).
I have found that weekly Humira has had a big effect on my AS symptoms. And a steamy super hot bath when I have what I call "inflammation pain" - which is that joint and bone ache. The hot bath makes the pain disappear - it's like a miracle.
I have also started using a big heat pack and that helps too.
I hope you feel better soon. Xx
 
My rheumy has been keeping up with my blood work every 6 weeks while I was on Remicade. I know they were specifically monitoring my kidney function and liver function because of some other stuff going on, I am not sure what other levels they were checking. I am going to myy rheumy tomorrow because they are starting me on Cimzia. I am not sure if I want to or not, I am at least going to go and have the conversation about it. I am just really nervous because I started to have a reaction to Humira towards the end, thats why I switched to Remicade, and then out of no where Remicade almost killed me and I do not ever want to go through that again. It was the most terrifying 20 minutes of my life. So I worry that I am going to have another reaction since its a biologic.
I am not sure what is causing the leg cramps, I am definitely not dehydrated, I drink at least 100 oz of water a day. My potassium might be low. It seems like more than cramps though, my bones ache and my legs and back start twitching.

As far as my diet goes, I have significantly improved it since I went back to work. I bring my lunch everyday and I try to focus it around protein and veggies.

My work is super strict about things that get plugged into our workstation, even something as simple as a heating pad, I could always try to get permission though. I have an appointment with someone next week to come do my ergonomic review of my work station to talk about getting me a different chair. I can't sit in mine comfortably, I have to sit on the very edge of it. For someone that doesn't have a core, I am exhausted after a few hours of holding myself up. My work also utilizes sit to stand desks, so I do have the option of standing and still being able to work. It has helped a lot.

Thanks for all of your responses
 
Good on you afidz. I am applying for jobs and I am terrified because I know how exhausted I will be every day. I am hoping that my body and brain will get used to it over time. I hope I can negotiate part-time and maybe some working from home to cut down on commuting too. But at the end of the day if someone offers me a job in my preferred line of work I cannot really so no. Like you I have not worked for 4 years.

Actually, I need to go and prepare for an interview right now.....

Keep us informed with how it is going, I hope the new chair helps.
 
Afidz, my heating pad thing that I have at work, it has no plug. It's a microwaveable stuffed animal. If you search Amazon for "Cozy Hugs", you should come up with a bunch of results (I have the cow). I realize that as a grown woman (I'm 36), it looks a bit silly to have a stuffed animal at work. So I usually put mine in a bag or pillowcase so that people can't see that I'm holding a stuffed toy cow to my abdomen. :p It works well and stays warm for maybe 30-60 minutes. But yes, my workplace has pretty strict policies about what can be plugged in as well, so that's how I've gotten around it. You could also make your own - I know a girl who swears that you just put some dry rice into an old sock and microwave that and it works just as well, although a sock sounds even odder to me than a stuffed animal! But I'm sure there are Pinterest DIY instructions out there for how to make your own microwaveable heating pad if you don't want to do a stuffed animal nor a sock. Or you could do a hot water bottle, bring a mug or something to heat up the water in the microwave and then fill the bottle with it. Many options for you for getting some heat to the areas that need it without anything having to be plugged in.
 
Hi

AS and crohns here.

Just started Humira. It appears to be thoroughly bitchslapping the AS, but not so much the crohn's (I'm still on 10mg of Pred a day anyhow).

I found on bad days to have little set goals, that achieving can give you something of a mental boost :). I can only speak for myself and not sure how useful for you it'd be, but you could adjust it for yourself.

Could be something as simple as walking down the street to the corner (if your having a really bad day), to lifting weights (in my case right now) after 8 hours of work. Sometimes it's not the act that's helping, but the feeling of achievement you get that pushes you to deal with it better. At least, that's been my perspective, and not sure it would help you, but maybe you think its worth a try :)
 
I went in to start Cimzia yesterday. They looked at my blood work from the night that I had a reaction to Remicade, and found that my white blood cell counts were very high. I told them that I had just stayed to get sick, but they said a cough and cold wouldn't make it that high. Ultimately, they decided to wait on Cimzia. They redid my blood work so we are just waiting for that to come back. If it's still high, they are going to contact my GI to find the source of the infection. (My bets are something hernia related)
 
afidz,
You won't want to hear this, but is there anyway you could work fewer hours for a few months? Once you get sorted out on your labs and meds, could you approach your workplace and explain the problems that you are dealing with now and how much you would like to keep your job, but you just don't have the energy or stamina for fulltime. Perhaps you could work out a schedule that gets you working fulltime in about three months. Depending on your energy and commuting needs, you could work a bit every day, or every other day, or mornings only, or whatever works for you and them. I think in the long run, you may miss less work and eventually be able to get up to fulltime without jeopardizing your health. They may even have someone who could help you develop a 'stamina rehab plan' to help you do some activities on your non-work days that will help. I hope they get the blood work sorted out for you soon.
 
I just used my FMAL for a disability leave its the first time I have ever done so. I have been out of remission for 4-5 years. I went back to work 11-16. I feel terrible I work retail, no breaks and usually no lunch break. its very hard on my body and to be honest the only time I have been able to stay in remission is when i was home full time. Its hard work, very physical and just hard on your body. Thank Goodness for great customers!!


Good luck


Lauren
 
This is all so much to deal with. Emotionally and physically. Right now, prednisone and pain killers are the only thing that remotely helps. I don't EVER ask for pain killers, when I do, its because I am close to my threshold and about to break. I lost my prescription of prednisone. So I had my rheumy call in another one yesterday. I have been to the pharmacy 3 different times in the last few days just trying to get relief. The pharmacy kept telling me that they didn't have my prescription. I literally started crying. I think the pharmacist could just see in my eyes how much pain I was in. She went and looked in the system, and saw that I had been told wrong. My prescription was there, but my insurance wouldn't pay for it because I had recently gotten it filled. I was so mad, why no one told me that is beyond me. Prednisone costs pennies. I'll pay for the damned thing for effs sake. So I finally got prednisone, I can breath again. I still just want to break down and cry, but at least the pain in my back and chest has subsided.
I just want the world to understand how much harder people who are sick have to work to barely get by. I know there are people in my life that think I complain a lot. There is always something wrong, but if they just stepped into my body for just a second, on what I call a good day, they would be singing a different tune.
Someone at work asked me about my health. She was very respectul about it, and she really just wanted to know what was wrong. I told her the gist of everything and at the end she literally said "how are you even alive? (let alone working)
Anyways, rant over. this too shall pass. I am strong enough to get through it. and eventually I will.
 
Well the people in your life who think you complain a lot have no idea how much you have to complain about that you don't! I am so glad you got your meds--what a hassle. Afidz I admire how you deal with your struggles. I so hope that they can get you on a med that helps and does not harm and that the surgeon can help you.
 
well, my blood work still shows a significant infection. Can't start meds any time soon. Rheumy is contacting GI to see what he wants to do. This is really starting to weigh heavy on me. I got a pretty awful cramp yesterday. It didn't last that long, and it didn't come back, but boy did it hurt when it was happening though. I don't have D, but I think its because I am taking pain killers right now and those always constipate me. The only thing that is noticeably wrong is that I am always tired no matter how much I sleep or how early I go to bed and my back and joints hurt. I just don't know what to do with myself. I need to work, not just for money, but for my self esteem and ego's vitality too.
 
I have been back to work after a 3 month leave for two weeks. Boy did the time fly!
My joints are giving me a hard time and I can hardly walk when i get home.
When I saw a Rheum. he said he saw no inflammatory changes on my X-rays.
If only you could see my fingers.

Hope you clear up soon,

Lauren
 
afidz said:
well, my blood work still shows a significant infection. Can't start meds any time soon. Rheumy is contacting GI to see what he wants to do. This is really starting to weigh heavy on me. I got a pretty awful cramp yesterday. It didn't last that long, and it didn't come back, but boy did it hurt when it was happening though. I don't have D, but I think its because I am taking pain killers right now and those always constipate me. The only thing that is noticeably wrong is that I am always tired no matter how much I sleep or how early I go to bed and my back and joints hurt. I just don't know what to do with myself. I need to work, not just for money, but for my self esteem and ego's vitality too.
Click to expand...
I am sorry for what you are going through. Are you taking iron ?
 
Hope they figure out what's wrong soon, and that you can start on something that makes you feel better! All the best to you.
 
My body is torturing me today, I am not able to doing anything…I am at work, and I am so tired that I not able to think right, or even care to keep my head up to look at my computer screen. I have had heartburn for about three days, and going on two days of mild flare ups. I have zero energy and so much to do. All I want to do is sleep, and sleep some more. I am tired dealing with the pain, my stomach cause me to have. I been doing good, I haven’t had one flare up in about month.
 
blacklung06 said:
My body is torturing me today, I am not able to doing anything…I am at work, and I am so tired that I not able to think right, or even care to keep my head up to look at my computer screen. I have had heartburn for about three days, and going on two days of mild flare ups. I have zero energy and so much to do. All I want to do is sleep, and sleep some more. I am tired dealing with the pain, my stomach cause me to have. I been doing good, I haven’t had one flare up in about month.
Click to expand...
Maybe you should call your doctor. Have you had your blood checked lately?
 
I am not taking any supplements right now, until recently my blood work has been pretty good. I am going to try to talk to my rheumy today to see what my other blood counts look like.
 

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