Realities Of Being Chronically Ill

The other day I was sitting in my chair with my feet up thinking about all the realities of being chronically ill. Truthfully I was sitting in my chair feeling sick as hell and all the realities of this illness crap began running through my head so I jotted them down for a blog post. Here you go:

1. I don't want to be sick. With all the realities I could start my list with I feel this is the most important and real one of all. When it comes right down to it who would want to be sick? Does anyone? Dealing with it everyday sucks plain and simple. I would never choose a life with illness but then again I remind myself we all get what we get and do the best we can.

2. To go along with  the first reality is the reality of how hard it is to live in the healthy world. When the chronically ill are out in the world it somehow makes us feel bad about the reality that we aren't like everyone else. We are good at pretending we are but our reality is much different. The amount of energy it takes to survive out in the real world when you are feeling sick is a hard one to explain. I like staying home and can always find something to do and when I can't that's okay too.

3. Mind games. The worst part about illness is you have to deal with the realities of what you think you can still do vs what you actually can do. In your head you can do anything but when you actually start doing something your body tells you otherwise. This is probably one of the if not the most frustrating parts of being sick. It's sad. It's hard cutting your losses when you don't want to. An example would be the other day when we decided to go for a walk. I knew it wasn't going to be easy but I thought to myself how do you know if you don't try. We got a little ways down the road and I told Rich I had to go back. It's so hard admitting to others, even Rich, that you can't do something. It was fine because when we got back we tried our bikes out and that was much easier for me than walking was that day. Who knows next week it might be the reverse I can walk but the bike kills me. The point is I didn't give up on getting out. Success!

4. Over time chronic illness changes you. In the beginning you fight to be the same person you have always been but after years of suffering you finally throw in the towel and begin to accept the new you. Although I wonder if we really ever accept the new person 100%.  Probably not. Longing for the old you never goes away no matter how far you get in accepting this hell. You do the best you can.

5. Sadly illness causes me to be angry, at times. This in turn causes me to be angry at other people. I can be a crabby bitch at times. I want to run away at times and never return but then what would that solve? I would be running from the illness? I doubt that would work because the illness would follow me so running would accomplish absolutely nothing. By the way I hate this suffering. It isn't fair. Well except on my good days then it's fine. So hard to put into words. My blessings wash over my anger. I am blessed in so many ways when I think of how different life could be for me I know I am blessed in so many ways.

6. There are the times being ill makes it hard to be around people. Watching everyone have fun without having to deal with all the messages being ill sent to their heads. For me I hear people talk and engage in conversation the best I can but at the same time I am in the conversation but other conversations are happening in my head as well. I hear, "Move your legs they are stiff. Get off your left hip it hurts. Turn your neck the other way that's painful. Get up and walk around to stretch out your stiff body. Get home and get to bed." Need I go on? No wonder I'm so exhausted when I get home from any type of outing. You could never understand it if you never experienced it. My hope in my blog posts is to bring some reality of living with chronic illness not to complain. I hope it helps others understand all that goes on behind the outward appearance.

7. Mornings suck plain and simple. Some days it takes three hours to really get moving. Some days not as long. It's funny how you wake up in the morning and the minute you open your eyes it's either, yes this is going to be an okay day or nope this day isn't going to be good. But then there are the days you start out good and by noon you feel like crap or vise versa. You honestly just never know what you're going to wake up to which makes it very hard to make plans. You might make plans to go out two weeks from now when you are feeling ok but the day comes and ugh you wake up and find you are just not up to going. Or the many times you force yourself to go to things when you really don't want to. Like I said above socializing is difficult. Short visits with people work best and the earlier the better.

8. It's no secret I am an emotional eater. It's obvious by my photos my weight goes up and down faster than a hooker on Friday night. Sorry but you laughed right? That's good! Do I dare say when I feel down from being sick I eat? The comfort of food that really isn't a comfort at all. I'm always struggling with this and probably will until the day I die from my obesity. I really hate how I use my illness as an excuse at times but there are times it's not an excuse at all just a reality. This goes along with exercise. It isn't that I use excuses just the realities of keeping up a house and keeping in contact with family takes a lot of my physical energy. I try to walk but not enough. I'm too weak to do areobic exercise at least right now. I did sign up for a arthritis exercise pool class that starts next week so I am excited to start that. I am hoping this will be the right fit for my needs. They say the headed pool is the best exercise for people with arthritis so I will let you know in a future blog. I tried a new yoga class closer to where we moved but had terrible pain that continued to get worse the longer I went. I decided it just wasn't worth it so I quit. Oh ya chronic illnes makes you a quitter at time.

Bottom line: I do the best I can with nutrition and exercise but I know I can do better. I also know it is okay to be where I am and I have accepted it, not totally but to some degrees. It's all a balance I guess.  

9. My support system is small. I know people mean well but people just want you to be well. It takes the pressure off them. I never expect people to make what I have been given any better. I just wish there wasn't always an elephant in the room. I am still a person. Stupid comments like it could always be worse or so and so has it worse off do not help me at all. Keep stupid comments to yourself. Just think of when you are ill like a cold or the flu do you want people to tell you that you are fine? No! You feel like shit. Now imagine that pretty much every single day. Can you? Just try. Be compassionate to others always.

10. Managing doctors appointments, blood tests, side effects from meds, etc is a full time job by itself. Add it all together and it's exhausting to stay organized. I want to throw in the towel on so many days but it just doesn't work like that.

11. Rules. I have so many ridiculous rules I try to live by. The biggest rule I follow is: get out of bed everyday and only use the bed for sleep and sex. I refuse to get back in bed no matter how bad I feel. Does that mean I never rest in my recliner? No! Actually I rest a lot. Do something and rest is pretty much how my day goes but no bed! Yes, I said sex because that is another rule: never give up the things you enjoy, never! I can add family, art, cooking, etc. the big rule is to live as normal of a life as I possibly can. Normal for me. Another huge rule for me is I no longer allow myself to ask why? The why  and trying to make sense of chronic illness will never happen plus I did this for so many years And enough is enough. My rules could go on. I believe it is important for everyone with chronic illness to have rules. Rules keep you focused on what matters and keep your mind from constantly dwelling on the illness.

12. The reality of trying to live everyday life is hard. Example: I need groceries so I make a list get ready to go and I might be way to exhausted from preparing that I can't even go. Yes that is true. Hard to believe to the real world I know. Lucky for me I have a saint for a husband who loves grocery shopping. A text to him and a quick answer back that it is no problem and he will go is like hitting the lottery for me.

13. Learning to say no. Huge reality. The cool part of this one is once you begin to say no it gets much easier. Then people start to understand and they quit asking. It is a relief not to be depended on for everyone's happiness. Of course that is my own fault since I allowed it for so long. Over time of living with chronic illness you form a very hard outer shell because you just don't have the energy anymore to over do it. It's freeing to be okay with saying no if it makes life easier for you. 

14. I might be physically weak but mentally I am very strong. Funny how that happens. In fact I think I am mentally stronger now than I have ever been. Fighting illness and living while you suffer makes you stronger. Chronically ill people are my heroes.

15. I like having a clean house. I use to clean every single day but now I clean when I can physically handle it. That means there might be a week or two of dust built up on the end tables but truthfully I really don't care anymore. I'm pretty sure if I died tomorrow no one will remember how clean my house was. If people come over to see my dust than they don't need to come over. You learn what matters and what doesn't that's for sure.

16. The reality of over doing it is one I need to work on still after all these years. When I do have a really good day I over due it and then some. What happens? I pay dearly and many times for days. Pacing is hard to learn while you live with chronic illness. I hope one day to figure this out. This may be somewhat of a repeat of the above but it is so important it cannot be said enough. Maybe it is the reality of accepting where you are at the present time.

In closing it is my hope that reading this helps the world to understand just a little what it is like to live this way. Most importantly I hope it gives my fellow chronically ill friends hope in knowing they are not alone. Stand tall. Show people that even though you suffer you are the winner in the end. No one can ever that that away from you. Keep pushing on by doing the best you can. You don't have to answer to anyone. I believe in you just as I believe in myself. Together we are the faces of chronic illness so live it the best you can!

God Bless!

Dianne

Roller Coaster Ride

Here I am almost six weeks out since beginning treatment. I can't say it has been easy. It isn't like you start treatment and you are magically all better, quite the opposite actually. 

My doctor wanted me to start out with the methotrexate dose which is lower than what he actually wants me on. Start out low and build up while the body adjusts to this brutal drug. I injected six cc once a week for two weeks then increased to eight. Like I always do I followed his direction. I did ok on the six but when I increased to the eight the side effects that forced me to to go off this medication the last time came back all to familiar. Sick! I'm not talking about just being sick for a few hours I am talking three days of brutal hell. Nausea, headache, very weak, very fatigued, lightheaded, blurry vision, need I go on? If you know me I am never the complaining type and I must write here I am not complaining just stating the facts of what happens to me when I make decisions on what I need to do for my health. It's never easy making those decisions and when you become so ill from those medical decisions they not only affect your physical being but they take you on an emotional roller coaster too. Believe me you are always on that roller coaster when you are chronically ill but adding treatment or changing things when it comes to your illness just adds a few more tracks to your roller coaster. The way I figure is by now I have made a long twisty trek around the world at least four or five times. Who needs to travel when you are chronically ill? You are on the ride of your life everyday. The three days after my injection I don't want to travel anymore. You sit, especially that first day, and tell yourself over and over that tomorrow will be better. After the three days the ride becomes easier and I begin to feel better. Once again better for me.  I have been getting four better days each week and I am thankful for that. Cured? No! Able to function somewhat better? Yes! Having those four days makes it easier to do a few more things. The things I need to do and not what everyone else thinks I can do because I say I feel better. That's the hard part when you say you feel better and people think that means you should serve them. No! I feel better to survive in my own life. I am learning the power of no. I am finally learning I am not here to make your life better. I am here now to make it through each day. It feels good to finally be in this place and know that it is ok.  I am happy I have more energy this huge for ME! Huge! When fatigue and muscle weakness are smacking you upside the head you have no idea how that keeps you down. It is hard to explain and hard for anyone to understand. These days I use my energy for me. I'm not being selfish just realistic in living with chronic illness. It's a must to get to this place for all of us who deal with being ill. 

Today is Wednesday and my fear builds. Tomorrow is shot day. I have the hope that the side effects will get better over time. If they don't I'm not sure I will be able to continue this treatment. Time will tell. I hope I can. My joints are feeling better and I am sleeping with less pain. The pain that was waking me up at night is much better and sleep is huge. I hope the benefits continue the longer I am on the treatment that I and my doctor choose. I am hopeful.

I will continue to ride the roller coaster enjoying the highs and lows even on the days I want to jump out of the cart and give up. If I don't make the decision each day to take what I get and make the best of it no one else is going to do it for me. Push on my friends you can do it too!

God Bless!

Dianne

Death And Life Living With Chronic Illness

II was driving to my daughters to watch the grandkids yesterday and my mind began to wonder. I thought about how life with chronic illness is so unpredictable. I thought back to when life was somewhat normal for me. A time when I was involved in so many things. When I was able to give little pieces of my soul and my goodness to the world. The lives I know I touched even if it was only for a minute or an hour. I pondered on how many years it has been since I was robbed of my physical ability to help others. I tried to figure out when the death of that life occurred for me. I felt sad trying to figure out the exact moment out. I can't really pinpoint the moment but I figured out it was a somewhat gradual death. I remember being involved in so much but I also remember when I had to cut back. When I first became so sick it affected my daily living I simply cut some things out but still forced myself to give. A good choice I am not sure now as I look backnow. I would wear myself so thin that I suffered even more but I always felt we all need to give out to the world and for me that had always been such a big part of me I could never give it up. The last thing I gave up was being a Hospice volunteer. It was the most painful decision I had ever made about my service to the world. I felt like I lost so many deep relationships and that I was giving up on the dying like the rest of the world does. I always found it somewhat odd how we think of the dying as another entity and not people anymore. Some of my deepest heartfelt relationships were with my hospice patients and I miss them and I still mourn the losses of the relationships I was never able to have after I had to stop volunteering. Thinking about that time I came to the conclusion that was my death, the death of Dianne, at least the old Dianne. But then I realized there was also a birth of my new life. The new Dianne. The Dianne I am still coming to grips with. I wonder if I will ever be comfortable with this new life but for now I try to get through each day one at a time. Gone are the days of planning a life filled with so much and taking it all for granted. These days it is more about getting out of bed and trying to do the things I must do and having enough energy for all the other demands of life. The real world part of life. Making plans or being invited to things that so many times I truthfully don't want to go to because I know there will be a price to pay. I also know there are times I have to make plans to keep people in my life. When you are chronically ill there are people who don't understand or as I believe don't want to understand who leave your life because they can't handle it. The few friends I do have and want to keep need to know it has nothing to do with them when I can't meet them. I am fortunate to know who understands now. I thought about this for a while how time weeds out those who care and those who don't. I also had the realization that I have done the same thing when it comes to people not only did people leave my life but I made decisions to leave people behind too. I had to delete the toxic people in my life. The ones who just took, took, took from me. The new me has more time to focus on me, as selfish as that may sound, but it is what it is. Quite honestly I don't care anymore. 

My new life. A life I dreamed of at this age? No way! Just finding my way living this new life. Like I always say the pain, fatigue, and other symptoms of chronic illness are easy to deal with because you know what you are getting. You get to know your body because it controls your life. It's your boss. The mental and emotional affects of chronic illness? Brutal to say the least. Longing for the way things use to be and trying to get that person back is one of the worst symptoms to deal with, at least for me. I continually compare the life and death of chronic illness to the life and death of life. We all have a life and die and after death we still have new life. In chronic illness there is the death of a life you once had but also life in your new life. You have to continue to live and keep the hope. Blocking out the voices in your head that tell you your life is over is a full time job and you must be in control of those voices and live and give the best you can. Maybe you can't do it like you use to and it looks different now but you are still living. Life goes on! Do it the best you can! 

God Bless!

Dianne

I'm Alive

Last night I posted on my Facebook page how being back on my meds for the past three weeks has started giving me my life back. I had a good weekend and felt as if my energy level was beginning to return. Then, this morning. Ugh-all I can say is ugh. I feel like I got hit by a bus. I can hardly move. How can I explain that? I can't except to think to myself that even though I am feeling a little better I have to remember I'm still sick. I still have to pace myself. It's so hard when you have a few good days it's like you want to do as much as possible because even though you feel better the illness is still there in the background waiting to rear its ugly head. It's all coming back to me that when I was on the meds before and feeling better I still had to be careful. The overdoing it part can put me into a tailspin of days of down time. I sit here wondering how I can find that balance of not doing to much and getting to the point of being ok if I don't get something done. I never figured that out before so I may need to talk to someone and get some help on how to find that balance, the balance that is right for me. I also know that putting that post on Facebook could backfire as people will believe I am normal again and I can start doing more but I can't. Yes I feel better but still not good. The methotrexate injection still makes me sick even though I am taking another medication to help with that. The main reason I stopped the injections before was because of the sick feeling. I wonder what is worse no meds and symptoms or less symptoms on meds with side effects that make me sick. I am coming to the realization that there is no easy answer to living with chronic illness. You can try to do everything right but you are still sick. Coming to terms with that fact is half the battle. I continue to encourage myself in believing that I am alive no matter what just in a different way than the rest of the world. My alive might be in my head and in my soul and not in all the things I can do. It's all okay. I have to continually keep myself alive because it would be so much easier to fall prey to the negative. It's a constant struggle but it is possible. It's possible for anyone in the face of illness. The title of my blog pretty much says it all Chronic Storms Chronic Sunshine. If you are struggling I would encourage you to stay alive. Come up with your own words to keep in your head. Chronic Storms Chronic Sunshine passes through my mind on days like this and on my good days too. I might be seeing the storms today but keeping the picture of the sunshine next to the storm helps me remember this is a bad day but tomorrow will be better. If not tomorrow the next day or the next. It's all in the hope of a brighter day!

God Bless!

Dianne

Treatment Blastoff

I was watching tv the other day and the trailer for the new and upcoming Disney cartoon movie flashed across the screen. It's called Inside Out and it is basically about all the voices inside our heads that argue with each other and try to run our lives. I'm pretty sure this is one I will be dragging someone to because I can relate so well.

The past few weeks after making the appointment with my new Rheumatologist I had so many of those voices going through my head I could have had a party and not invited a soul because my party was so packed there was no room for anyone else. The voices telling me so many negative things that I became very anxious and stressed as the appointment approached. I went yesterday wondering what was going to happen since it had been a few years after weaning off the drugs. The new doc walked in and introduced himself along with a student then as he sat down said it had been a while since I had been in. I told him the reason which was because I wanted to try it without the drugs and he asked me, "And how's that going for you? You have to understand before I even answered I had to laugh inside because he had that smile on his face because I knew he already had the answer. I answered anyways, "Not good." He kind of let out a little smirk and made a joke about my list, or Dr. Key called it my love note, I brought in of all that is going on and all the newer symptoms since the last time I was in. New blood work findings, new arthritis, worsening fatigue, the fact that I am basically just getting through each day with no quality of life. The list was much longer than that but you get the idea. He said he thought I was an engineer because of how I had everything listed so perfectly. I told him I am very organized and we all laughed. Hey if I don't write it down I don't remember. He checked me over and finally after always being told I had Inflammatory Arthritis which my Rheumatologist thought was Rheumatoid Arthritis I have a definite diagnosis of Primary Sjogrens with Inflammatory Arthritis. What a relief! I have been seeing my Rheumatologist since September of 2006 and finally In May of 2015 I have a positive diagnosis. It feels like a weight lifted off my shoulders. I always knew as did ALL the other docs I have seen that something was wrong but they always told me it is very hard to pinpoint autoimmune diseases in so many people. There are many autoimmune diseases that haven't even been discovered yet and the ones they do know about there are over 100. Can you imagine being a doctor and trying to figure out what one person suffers from? It has to be like finding a needle in a haystack. I must say my doc's have always stuck by my side discouraging me from stopping the treatment a few years ago but it was something I had to do for myself. I wonder if I had stayed on the treatment if I would have received a diagnosis or if I would still be wondering what exactly what it is.

The best part is there is treatment that usually works well for Sjogrens and it is mostly the same drugs I was on before, hence the reason I felt better on them. So drug blastoff was last night when I started with my first injection of methotrexate. It will take some time to get relief as the medication takes time to work but having hope that this pain and all else that goes along with it will get better. The hope I can get back to some sort of normalcy and be more active is a bright light shining at the end of the tunnel, a tunnel I know will never end but the light is there. It's hard knowing you will never be cured unless research finds a cure but it's ok because it is what it is. You learn to deal with what you have. One day at a time pacing myself as needed and learning to be okay with it. Looking back on the past nine years of no true diagnosis just the inflammatory arthritis diagnosis I can finally say it has a name! I couldn't be more relieved and happy to have that now. It's hard when people ask you what you have and you tell them and say the doc's aren't real sure what type of inflammatory arthritis it is. You get the deer in the headlights look and maybe it's just me but the nay sayers who say we all have arthritis. I always want to say do you have this and this and this and this and this and this too? I bet NO you don't because there is a huge difference between aging arthritis that we all get compared to autoimmune arthritis that affects so much more that your joints. It is amazing now to educate myself of Sjogrens and find that all the things I suffer from are because of this disease. Amazing or unfair? I don't know. Either way it still sucks. End of story.

When I left the doctors office yesterday the voices in my head began dancing around. This time instead of telling me all the negative shit I have heard for past nine years about taking medication and telling me things that I knew weren't true they were singing in harmony. FINALLY! It's been a long haul but the day is here and it's a beautiful one. Diagnosis helps us to cope better with what we have. It calms the voices and gives us hope and confirmation that the meds are needed. I don't even think the car door was shut and I was dialing Rich's number to tell him. He was as happy as I was to hear the news after all he has lived this just as much as I have. He knows. He's been a rock through this hell and he has this disease just as much as I do. Needless to say I didn't fall asleep very fast last night as I felt like I was on cloud nine, ironic since it took nine years to get a definite diagnosis. I woke up this morning realizing it is a diagnosis but also realizing that I still feel sick. It isn't like diagnosis magically took away the pain and suffering but now I will push on knowing when a mysterious symptom appears it's Sjogrens fault not mine and for that that is peace. Take that voices!

God Bless!

Dianne

Ahh To Begin Again

I'm sitting here both terrified and, in an odd sort of way, excited as I am preparing myself for a stressful doctors appointment tomorrow. I haven't had this feeling in a long time actually almost two years because that is when I weaned off all my meds and decided to go it alone with this chronic illness misery. Don't get me wrong I truly believed stopping the meds would change my life for the better but I am realizing how dead wrong I was. I have to admit it I am in misery. My primary doctor has been trying to get me to go back for over a year now so her message the other day about some blood work I had done helped me to make this decision too. The vicious cycle of pain and fatigue are ruling may life. My quality of life is in the shitter. When I look back now on the time I was on the meds I have to admit I felt better. Was I doing great? Did I have a "normal" life? That would be answered with a big fat NO! But I sure do hope to find some sort of new treatment plan tomorrow. 

I have been going over this appointment in my head for the last half hour obsessing about if it will be a waste of time or if the new doc I am seeing is going to be rude. All the crap that runs through your head when you are chronically ill and have to go to the doc or any doc for that matter. When it's over it's never as bad as all the voices convince me it will be but still very, very stressful. I know my quality of life is bad and I admit I need help but along with the help comes all the doctors appointments to assess how you are doing. All the blood tests to make sure your liver isn't shutting down. All the expense of the meds and constantly being aware of refills because once you are on these drugs you cannot to run low on them or you will pay.

All my anxiety brought me here to write once again. It really does calm me down. The only place I can let it all out and not feel like I am being a burden. Rich is working a lot right now and I mean a lot so I hold so much in so I don't worry him. Plus I'm not a complainer so I internalize all my anxiety when it comes to these appointments but I am pretty sure I will burst and cry to Rich tonight. In fact there is no doubt about it. If I don't release this tension I know it will harm me. Stress exasperates symptoms so I have to deal with this by whatever means possible which means a good cry and a pep talk from my biggest fan. He always makes me feel better. So with that I sign off but I'm sure I'll be back so to vent about something else.

God Bless!

Dianne

Pick Up The Phone Already

It's time. It has been a year and a half or more since the last time I saw my Rheumatologist and weaned off all my meds. When I first stopped taking them I was doing ok and thought to myself I can handle this no meds things. Yes, my pain and fatigue were worse but nothing I couldn't handle. I can do this! I can do this was running through my head a lot at that point. I made up my mind that this was not only going to be a "I'm off my meds time," but a "mind over matter" time too. I thought that if I didn't think about being sick and about being in pain it would disappear and that would be it. Like I said many times before being sick isn't just a body/symptom thing it is a total mind thing. My mind was in overload mode fighting the changes that were taking place after stopping the meds. Telling myself I'm not sick I'm fine was exhausting. All the time I spent in my head telling myself that when I was on the meds and it was ok now turned into a lie almost. I thought I was okay with taking meds and being sick but then when the meds were making me more sick I fought with the idea of weaning off them. When I made that decision it wasn't like I woke up one day and decided today was the day, it took weeks actually months to decide to stop. That's the bad thing about being on drugs, in our heads we think we don't need them but our bodies tell a different story. I am at the point where the struggle of pain verses drugs is a constant conversation in my head. My doctor told me that it takes time for all the drugs to leave your body so I'm pretty sure that is why I continued to get worse over time after stopping them. My nights are filled with such pain I wonder some nights why I even go to bed. I wake up every morning exhausted because my quality of sleep is horrible to say the least. Being awaken by pain no matter which position I lay in is very discouraging. The discouragement has brought me full circle back the drug conversation that went on in my head when I stopped the drugs but this time the conversation is about getting back on the drugs. Now I know there are the haters out there who wonder why someone would take such harsh drugs but the haters have never lived the hell that I have lived in. The haters who say you should exercise and eat right and you will be cured have no idea. I have no doubt that works for many but not for all. It's like so many things in life what one person chooses to do may not work for another so we all do what is best for us. When I woke up Monday morning I finally did it. I picked up the phone and called my Rheumatologist to make an appointment. It was such a bitter sweet feeling. Bitter when I picked up the phone feeling like I have given up, stopped fighting. Sweet knowing there will be some sort of relief in the future. I hate the idea of the drugs but I want my life back. My quality of life has deminished so much since I went off the drugs. Was it great on the drugs? No. But livable. I always had a hard time doing any physical work but it has just gotten worse without the drugs. I slept so much better on the drugs too. I am looking forward to that. So this is it! Next week I will see what the Rheumatologist has to say and go from there and to think after all this time all I had to do was pick up the phone.

God Bless!

Dianne