Is Hope A Burden? And Accepting Circumstances…

I have been in a different place as of late; all I can say is that there has been an internal shift and this last round of die-off did something to me on a deep level.

As you know (I think at least) I had kind of a double whammy that began with starting a cellular detox May 20th followed by treatment by my LLDC May 23rd where he found that the three B’s were in remission, but that I had Epstein Barr, Non-STD Clamydia, Erhlychia, Lyme Coinfection virus A and C, plus Protozoa.  The first several days after treatment I was fine, felt great in fact and even had some activities with friends. But then I got hit hard and went back down the rabbit hole as I call it. I had been experiencing horrible body pain (much worse than the norm), bad enough to keep me from sleeping at night and causing several bouts of tears, both from the pain and frustration. Also any energy I had got snuffed out, went into a foggy place again, swelling worse… You know, all the usual stuff. 

Somewhere in the midst of this the hopeful light in me went out; it’s just been too many years….too much struggle. Thankfully I felt a slight lift a few days ago and checking the calendar it coincided almost exactly with six weeks post/treatment (they always say die off runs about six weeks with this therapy). I am still not feeling great but I think (hope) this accute bad spell is behind me. But I am left on the other side of this most recent storm a little different than when I went in. It’s hard to explain; I have been through the mind-numbing years when things were unbearable and I was in a state of apathy, grieving and hopelessness, simply surviving one day at a time. I have been through the period following this of awakening and letting go of grief and the regrets of lost time and loss of life and having so much hope for the future… Letting myself dream again. But now I seem to be in a place of complacent acceptance where hope itself has become a burden and not a joy. 

I guess I need to clarify that I have not lost hope in the Lord or the fact that He has good things planned for me or is doing good things, not at all. By His grace I have grown so much and continue to grow. I am blessed by a family I love dearly and we all weather this ongoing storm of chronic illness together because we are all in the same boat, it’s drawn us closer. I am blessed by some of the best friends a person could possibly have. I am blessed by my dog who is a gift from God (Shiloh’s Story). I am immensely blessed by my current job and the people I work with. But I am coming to recognize that some things I hoped would happen in my life are not happening and may never happen, and living every day thinking about what may never be is exhausting. So I am mentally closing the door on finding love, having a family, being “normal”, traveling, all the stuff that people do….  If God chooses to open that door that’s up to Him and it will be welcome, but I need to accept this little room and this life the way it is and just live my best for God one footstep at a time, one encounter at a time. If an online platform for fellow I.I. Sufferers is my calling and my little window out into the world, I have to be okay with that.

No I can’t be financially independent. Yes I have limited energy and have to manage my spoons. Yes life is a yo-yo with periods of brief normalcy followed by times of scraping by. Folks I’m just tired, and desires for the big stuff has kind of been squelched. 

Is this a good thing or a bad thing? Honestly I’m not sure, and the answer may be a little of both. I have been reminded a few times lately of Joni Earicson Tada and her story and her amazing minsistry. She had to come to acceptance of the fact that she would never use her arms or legs again (something that is unimaginable to me) and she has lived in so much grace and love. She has touched millions and that never could have happened if she grew bitter or kept striving for healing that would never come. I can’t think of a better role model than Joni. Who am I then to think I deserve better than this life of struggle I am living? Even if I am single forever and I never have a typical/normal life or the things most people take for granted, Or will never be able to eat everything I want, or do activities I want, if I forever have to pick and choose between things in life according to my energy level, if I have to deal with a certain level of constant pain, fatigue and swelling…I am still blessed and I can do a lot if I just let God do whatever He wants to do with me day by day.

So today after having taken a nap that has (again) become a common occurrence, sitting here on my bed with a bit of deep tissue pain, the usual swelling, headache and fatigue… I recognize I was also able to take a little walk in the pleasant summer rain with my fur baby love of my life, come home to a safe comfortable place to my loving family, and be able to write this post. Life is hard, but it can still be good 🙂


Beautiful slightly stormy sky this evening 

No Wasted Days In The Kingdom

My dear friends a couple days ago I wrote a new blog post trying to explain what it was like on a day of struggle. I wrote it as an outlet on a bad day that (seemed) like a total waste and just another hole in my life; I had no idea how wrong I was…

Lately I have been exploring with the Lord what it really, truly, tangibly means to work out my faith and walk in faith when I (feel) that my life is in a stagnant state, not being able to do everything I want to do, not being able to be active in the way I want…

What I believe He has been teaching me is that this means that my posture before Him must be one of praise, worship and rejoicing no matter what I feel or what my eyes see. That working out my faith in these places is all about attitude, perspective and obedience.

Also I have found that He has been working on my worst days when I do choose to be obedient. It’s hard when you are alone in your room not feeling up to doing anything and you’re like “Lord, what does being obedient look like on a day of nothingness?”

On a few of these days He has called me to write and this has been more fruitful than me writing on days I feel better.

So back to His miracle of redemption on me writing about a day of waste and emptiness. 

I wrote the post I shared ( Confessions Of A Functioning Lymie) on what it’s like to live through one of those in between days where people don’t see you, where you don’t feel up to doing anything, and God used that post in ways I didn’t see coming. 

You see I’ve been blogging for about 3 1/2 years about my Lyme journey and it has been fruitful and God has definitely used it to reach and help others. I do get contacted personally from time to time by other Lyme sufferers both through my blog and Facebook page, sometimes asking for help and advice. This can be overwhelming at times and heart-wrenching at hearing the depth of suffering and being unable to help, especially when the people have no access to treatment or the ability to afford it.

Usually when I post something new I will get under a hundred hits on that given day, but of course visitors will continue to read it over the coming days, months and years… The biggest “explosion” I have ever gotten in my years of blogging on a single blog post was over 200 hits in one day and it was something! 

Weeeeell, much to my surprise my most recent post exploded like nothing I have ever had before; other Lyme bloggers and Lyme related pages re-blogged and re-posted and on its first day it got about 1,200 hits, 2,300 on its second day, and as of about 8pm Saturday the 18th it’s gotten just over 6,100 hits. This is beyond me and my ability to promote. 


Well boy oh boy is God teaching me about redemption. I am getting so many responses and personal messages that are touching me and breaking my heart, but showing me how God uses suffering. Here are a few:


Blog Comments

(Since these people’s comments are public when they post them I am hoping it is okay to include some here)

I am struggling terribly. I have been diagnosed and the drs office treated me until the ins stopped paying the huge mark ups on the seevices and no lyme in Texas theroy leaves me bewildered. No one will treat my Lyme and I have lost all hope. My finances are terrible and the drs lack basic knowledge and refuse any effort. The disease is winning and clearly my husband and my kids 5 teens and 1 yr old grand baby deserve better…”.   ~Sara
Thank you for writing this. You just described my life verbatim. Although I do not enjoy hearing of another’s suffering, it is nice to know that I am not alone, and that someone else knows and understands what I am going through. God bless and speed you in your recovery, may your good days outnumber the bad ones and continue to multiply!”   ~Cheryl

“Is there a way to subscribe to your blog? I am not seeing it. I just read your BIO and it sounds just like me so I’d love to see your new posts as they come. Thanks.”        ~Traci

Thank you for writing this……I feel like I could of wrote this myself as this is exactly how my life is on a daily basis down to the exact meds and trying to plan out when to take them. Glad I’m not crazy and the only one that experiences these specific things. I wish you all the best and hope the good days start to out weigh the bad.”       ~Brenda

Wow. I’m at a stage where I don’t talk about my symptoms anymore because even I’m bored of hearing it and I’m also embarrassed every time I see that “oh, here we go again!” look on someone’s face if I dare to mention that my legs hurt or I’m exhausted (the usual response is “but you haven’t done anything!”). This is the first time I have read the experiences of others and it is so good to know that I’m not a mad, paranoid, hypochondriac but a normal person living with a disease that the medical profession will not accept or treat. “.          ~Julie


me exactly as well. it’s been going on (and off and on and off and on) for 21 years. danced (clean) for a solid 4 hours about two weeks ago, and paid for it a few days later and currently still in recovery mode. my first appointment with a lyme-literate professional is tomorrow. THANK YOU FOR THIS. ~Gwupara

Thank you so much for writing and sharing this! It’s as is if I was ready my life! You are right, only Lymies will understand and that’s what I try to remind myself when I feel judged. They are not walking in my shoes so it’s not fair for me to judge others either. Praying for strength and health for us all!”   ~Karen

“Hooked up to my IV antibiotic as I read your post! Late stage Lyme that is attacking the Neuro stem of my brain. Ms/stroke like flares that occur about every 5 weeks lasting 7-10 days. Right sided paralysis, left sided severe migraine, cognitive impairment, visual distortion, aphasia and slurred speech, all over painful muscle spasms with continual involuntary twitching. The body becomes possessed and there is nothing to be done about it until the flare runs its course.             You then have 3 or so weeks to recover, get back on your feet and try to regain some strength, just in time to do it all over again!     A total nightmarish hell that began out of the blue 3 years ago slowly killing me a bit more with each day that passes.                                       I get up, dress up, makeup, and show up usually with a smile! Must not quit, must continue to perservire. What’s the alternative! Got two small kids, can’t work, going bankrupt due to Medical bills and tests not being covered. The list goes on and on with no explanations, rationalizations or solutions. Just prayers, prayers and more prayers, to understand, to cope, to live”.        ~Sheryl

Thanks you so much for this. It made me cry but also gave me a chance to post it to my friends to see if they can understand me. I am on a downward spiral and I can’t seem to stop it. I am in a wheelchair but I keep working 3 days a week. You could of written this for me. Thanks heaps and I hope that your struggle is less. xxxxx”.  ~M.I.

“I’m so sorry. You have just described my life exactly. I was in medical management and had to stop because of what you described. I walked in everyday after work and got in bed and stayed there. Now, my disability insurance is denying my claim…..”    ~Kathy

The other amazing thing is what was happening last Monday night the 13th; despite not feeling well and having worked all day, I went to a gathering of six ladies Monday night. One of the things we did as a group was each of us prayed and had an activity of writing down prophetic words for each other. It was amazing as they were read around the room because of the continuity of what was received from the Spirit for each woman and each had so much personal meaning.

For me, sitting there, not feeling well and not being as “present” as I would have liked I received words from three out of the five women about hearts; having a ministry to other people’s hearts/that people would come to me for healing not of their bodies but for their hearts/that people would come to me because I would understand/that God has entrusted me with a heart ministry…(!!!)

Wow, none of these ladies knew what was going on in the online world that day and that people were indeed flocking to my post and messaging me.

I was so touched by God and His redemption and that He was using me on a day I felt empty and unusable. It really teaches me on a deep level truths I already knew; everything God says about suffering. 
Suffering has been talked about so much at my home church and we have all suffered, none of us has been untouched by it. I know I have shared that God as our Redeemer and His redemptive power has become so personal to me and that not only can we believe that He can use our suffering for our good, His glory, a testimony, a ministry, to comfort others with the comfort we have received, our refinement, growth in faith…. But that we can with TENACITY chase down these things in the very midst of suffering as our blood-bought right in Christ! We needn’t sit back and think that during the trial is just a misery to get to the blessing at the end, and have promises at the end of suffering, no, ours in Christ is having those promises in the midst of suffering; a promise and purpose in every pain. Nothing ever wasted, ever. 

I was also very blessed yesterday to get in on an appointment five days sooner than what was scheduled with my doctor in Anacortes. The pain, swelling and fatigue had really upped their anti the last several weeks (I still believe it’s die off from my treatment of half a dozen little buggers). I had really taken a dive and have been sleeping like 12 hours a day with naps in between on days I’m not working. He said that my autoimmune reactivity was indeed very bad and he could tell my body was in crisis mode.

Thankfully he did necessary adjustments and hopefully the fire will calm down. Pain and swelling still bad bad bad today, but I feel clearer and have a better sense of well being.

Onward and upward. 💚 #deathtocoinfections 👊🏻
To sum it up though I have been given yet another shot of hope, not so much in my body as in my spirit, and I know that there are facets to this journey I have not even begun to understand as far as what God is doing. But I know He is working mightily. 

Confessions Of A “Functioning Lymie”

I look fine. I may seem fine. I probably sound fine. There are some new photos on Facebook from a couple weeks ago of me out with friends, smiling and having fun, having a few days of normalcy that are momentous and rare to me, but would probably not be a big deal for you and just a normal part of life. They were taken during one of those glorious and all too rare periods when I had several consecutive days of energy and feeling pretty good. (Today is not one of those days.) 

(*disclaimer; I have to attest to the fact that I am still on an upward track with my overall health and what I am experiencing right now as far as this current setback is die off from recent treatment on May 23rd….at least I believe so). 

But what people don’t see are the days inbetween, the days that I spend in a hazy purgatory of fatigue, fuzz, pain, swelling, isolation and my body’s betrayal against life itself. 

I have to work tomorrow and I know that somehow I will pull together like I always do and put everything I have into doing my best at work, doing everything I can to just seem normal and do my job to the best of my ability, and thankfully I have been blessed over the years to stagger along in this manner; being a functioning Lymie.

 I also have a gathering to go to after work tomorow and this is causing me distress. Why? Not because I don’t want to go, but the complete opposite! I want to badly and it is vitally important to me. But for me I don’t usually do anything on a work day afterward because I just spent the day giving 100% to my job and I will be drained, tired and numb. Instead of having fun I am worried I will just be in a haze of fatigue and rather than enjoying myself I will be a half-human whose mind is only about 30% present and therefore will get about 30% enjoyment being with my dear friend. These are the challenges faced by the upright and mobile Lymie. Spoons anyone? (Spoon Theory)

That said, when others can’t see the sickness (I haven’t lost hair, I don’t have an IV port or a wheelchair, I’m not gaunt or jaundiced) how can I convey what it’s like to be a functioning Lymie? (Please note I am also using the term “Lymie”right now in a generalist sense because I believe I am clear of the Borrelia itself at this point but I just got treated for still-present coinfections: Erhlychia, Clamydia (non-STD form), Epstein-Barr, Lyme Virus Coinfection A, Lyme Virus Coinfection C and Protozoa. But as we all know chronic Lyme is never just Borrelia). 
I know that the yoyoing makes no sense to outside observers, those who don’t understand chronic Lyme; how can you be having fun at a festival one weekend and then in bed unable to socialize the next? Trust me it’s complicated, and frustrating isn’t a strong enough word for those of us that live through it. It is like being baited with tastes of life and constantly having it snatched away again. 

So what is life like when I’m not doing so well, and you don’t see me, and there are no photos taken? :

I wake up at 10am, I  don’t feel like moving. I feel groggy and heavy and “hungover”. I had a hard time falling alseep last night, like most nights. It’s a catch 22 because the stuff I take to help me sleep can also leave me feeling tired the next morning. Despite getting 9 hours of sleep I don’t feel rested at all….I may need to take a nap today. My brain feels like it is still in that state of shutting down, you know like how it feels when you are in the process of trying to fall asleep? It is doing the opposite of what it should be doing, being that I am trying to wake up. I do haul myself out of bed and I try and have some caffeine to counteract my wayward brain and body. I also take my morning pills. Since they are supposed to be taken away from food I wonder as I do every morning whether the creamy fluids are a problem. As usual the matcha green tea hemp latte isn’t doing it as far as waking me up, and although I am not supposed to have coffee, I reach for it anyway hoping that it will be my nectar of life. Sigh, I know this will continue the vicious cycle of inflammation and irritating my iGg reaction, but I so desperately want to feel awake. Choices choices…

I then decide to take a bath with Epsom salt and baking soda to help with the pain and stiffness, and to help me detox to (hopefully) help with this hungover feeling. After my tea and coffee and morning pills I feel too nauseous to really eat. I will probably have a bite of something here and there but on most days like this breakfast and lunch sort of meld together and meals get messed up. I also have my two doses of meds, morning and night that have to be taken two hours away from food and other pills….I am already off schedule and my day just started. I pretty much know that my dose of cholestyramine will get skipped yet again (like it does most days) because it also has to be taken 4 hours away from food or other pills. Then there are the pills to be taken with food… Might not get those in today either. This is impossible. 

I spend maybe an hour in the bath catching up with Facebook  and mail, listening to my current audio book, reading my Bible app and playing Candy Crush and Words With Friends. I eventually drain the water and spend at least another 30 minutes sitting in an empty tub because after a bath or shower I usually feel weaker, more lightheaded and struggle a little with feeling breathless and have a harder heartbeat. (This phenomenon: Why Do I Feel Worse After A Shower?). 

I finally get out and get dressed, my equilibrium is off and I’m a little tippy. This is not entirely normal for me and I attribute it to die off/herx (What is a Herx?)

I look down at my body which I usually try and avoid at all costs; it is swollen and the edema is especially bad, and my legs are jiggling like a water bed (you think this is an exaggeration, it is not). The water retention makes my legs much bigger than they would be (come to think of it I haven’t seen what my body would look like without fluid in the last 7 years or so), It has also been this long since I have worn jeans or slacks because of aforementioned fluid. Did I mention it also hurts? Imagine the worst sunburn you have ever experienced, now picture the deep muscle ache of a hard workout after having not worked out for months… Got it? Okay. Now combine the two together and imagine them not on your skin or in your muscles but in all the deep tissues in your legs. Now imagine that pain is constant and you’ve had it for so many years you can’t remember a day without that pain. The only variance is that on good days it’s a low-grade 2, and on bad days it can be an Advil-inducing 8. This is a further incentive to keep a strict diet because increased pain and swelling can be almost instantaneous with ingestion of “bad” foods. (although I fail so often with a bite here, a nibble there…and remember the problem of coffee!) Thankfully for the most part it has been improving and today the fluid is bad , but the pain is maybe a 4, even though the lower half of my body  (that I always hide and cover up) looks like Rosemary from Shallow Hal. I am just blessed not to have cankles today. 

I see my face in the mirror for the first time today and it is of course all puffed up, most notably under my eyes. This is now of course also my normal and I wonder what I would look like “unpuffed”, I do get glimpses from time to time.

It’s now into the afternoon, I  haven’t eaten much, I feel fuzzy in my head and tired despite my green tea and coffee. I really don’t know what to do with myself today because I’m too tired, so I sit on my bed with my phone. I would love to go on a walk or bike ride, but I feel like I can’t even force myself to get up and go do anything. I have my standard low grade headache; this is something I actually don’t really complain about or even acknowledge because it is so normal I don’t know what it feels like not to have a headache. 

Many of you wonder why I don’t paint or do something artistic on my days off like this, it’s hard to explain. There is a definite disconnect in this hazy purgatory where you are aware that there is a part of you that can do those things and enjoys doing those things, but you can’t access that piece of yourself, even if you wanted to. Believe me I’ve tried! I’ve sat down and tried to paint on days like this and it’s like trying to draw water from an empty well…it just doesn’t happen.

So here I sit, another day of nothing. Another day of waste. A day where the tears do come. Another day sacrificed to the hungry Lyme gods that eat our lives and our souls…one apathetic day at a time.                                                                   

I’ve given so many years of my life to days like this they can’t be counted. I’ve given my twenties, and now most of my thirties. Only Lymies will understand this, but this disease EATS YOU! It eats your body, your mind, what makes you you. It also eats your time on this earth.. Like water eroding the shoreline.

Today I need to pray more. Today I need to focus on God’s truths; because on days like today that are empty nothing’s sucked into the void, I have nothing else. 

Looking “fine” a couple weeks ago

The Chronic Lyme Coma

This chronic disease thing is interesting; on one hand you have days (weeks, months, years…) where you live in kind of a haze, out of touch and not quite yourself (even though you may “look fine” to others). Survival mode as I call is just where you are clinging day to day, surviving, getting by. In that way time just sort of passes you by and even though everything you are missing out on hurts, you are sort of numb to it at the same time.Then you have times where are doing a bit better and get your head above water so-to-speak. These times can be hopeful and wonderful and amazing! And yet you can in these times experience the deep pain of loss and loneliness for everything and everyone you have missed out on in your life. So moments of “life” can be very bitter sweet, and depending on how you handle them, can be even more painful than the drudgery of malaise. 

Does anyone else experience this? Where you could almost want to bury your head in the sand again because you feel the pain so acutely of lost time, lost experiences, lost love…. Things unattainable that have passed you by?

It is a fight to live through chronic illness and (I find) it is a fight to come back out of it. I wonder how many people have this experience?

It’s like your body and mind are in a certain gear, and I know having learned about neuropathways that they can be very hard to change, especially with habits, addictions, lifestyles and living a certain way for a long time. But it can be done, so does anyone else who is actually escaping the grip of death by spirochete feel like they have to go through a recovery process and learn how to live?


#lyme #chroniclyme #isolation #loss

I’m Literally Sick and Tired Of Running Out Of Spoons

Most *Lymies at this point will know about The Spoon Theory, so when I say I keep running out of spoons you will know what I mean.

I am frustrated because I have been going through a cycle the last couple months where I have fewer spoons to use (I’m short of a whole set right now). Again as many *Lymies also know  you go through good and bad cycles that can last for months, and what is FRUSTRATING is that you don’t know why!

#4!

You can drive yourself crazy trying to analyze every little thing you eat and do that brings you up or brings you down, and sometimes you just don’t know. 

all that said I had a pretty good weekend; I DID stuff. Stuff with people! And it felt really good. But today I am feeling overtaxed and that I need a day of rest after doing too much; you know, gotta recoup from being “normal”.

It stinks because I have been missing my Monday night Bible study for weeks, and I miss the people desperately and I need the spiritual connection. 

I could spend a few hundred words here trying to dissect why I have been in a slump, and people will inevitably ask “have you tried this or that?”; all I can say is that I probably have the best care practitioners I could possibly have and I have gotten over a lot of stuff with their help and expertise, I will keep trusting I will find answers for the rest. So You Know Someone With Lyme

*at this point I know I have gotten a lot of the Borrelia and coinfections under control, but there is also a lot of other stuff going on in my body (see past posts). So it is speculative what’s going on internally right now 😛 

Anyway, it all comes back to balance and having faith that someday (hopefully soon) I can do stuff, stuff with people and not have to pay for it. 

Coming Back Out Of The Dark

So the people that saw my Christmas Eve AM post may know that the last several days have been……bad; and not just “bad”, but underscored italiced bad . I had not expected to have a Christmas Eve and Christmas this emotionally miserable since 2012 (talk about bad). But sometimes life hits us unexpectedly, disappoints us, lets us down. Even when you have been doing really well spiritually and God has been providing in the midst of hardship, you can still go down hard. 

The holidays have been disappointing and difficult for so long now I can’t even recall how long it’s been, and every year we say “next year will be different”. But for most things we are still waiting. 

That said, my little bit of devastation was enough and the enemy moved in and attacked with everything he had and I did succumb for a little while. But I have learned from far too much experience how to remove daggers, and thankfully the process grows shorter as the years go on. God is good and He is not leaving me alone in my misery and He is pulling me back out again. I am also blessed to have friends that won’t leave me alone either and speak truth into my life.

Yesterday was better than the day before, and so is today, and to further emerge from darkness I (finally!) will see The Force Awakens with my aunt. 
Let us pray for no sneak attacks on the 31st, which has never been a good day for me 😜

  

Hope, And A Look Back

12/23/15. Hope,
I wrote the short essay below about 3 years ago. I remember acutely how it feels to be in this place; it is like a living death in some ways… losing yourself.
2012 was one of the worst years of my life even though I finally had a diagnosis of what was wrong with me. It is the year I went through being bedridden during initial treatment, being unemployed and unable to work, unrelated to illness I was devastated that I had been believing something for 7 years that I thought was from God and ended up being false. My faith for the first time in my life faltered and I stopped talking to Daddy.
How much has changed in 3 years. I am however incredibly grateful because I can look at what God has done in my life and how He has changed me (for the better!). He has truly taught me what rejoicing in trials looks like and that I can live the truth that all things work together for the good of those who love Him and are called according to His purpose. He has used me in unexpected ways and brought people into my life that I would not have met if it had not been for my illness. Now that is God.
For those who are still in a place of deep suffering my heart reaches out to. I would be happy to be contacted either through this blog or my Facebook page so that I can do my best to encourage you.
So here is what being a little lost girl felt like:

Little Lost Girl
The Other Toll Of An Auto-Immune Disease

At some point I stopped looking in the mirror; of course not quite literally because I need to do my hair and makeup in the morning, but a long time ago I stopped “seeing”. So it was a bit of a shock when one day I actually did see, and I didn’t recognize myself. I look old, I look sick, I look puffy, I look fat, I look frumpy. Gone is the girl I see in photos from several years ago, and not just physically, because that girl had things she enjoyed doing… people she wanted to spend time with…she had an inner passion for the things she loved, and had so many hopes and dreams….

I look in my closet and there are the clothes that I no longer wear, the digital camera that I have never used, the containers of craft materials that I no longer have an interest in….because life used to be not only about today, but about tomorrow too. Now I struggle to get through just one day at a time, just surviving, there is no energy for anything else, and it is more than physical, my brain is tired too. I used to love crosswords, but sometimes it is too hard to recall the words I know that I know, or to spell words that I know are locked somewhere in my toxic mind.  People are too hard to be around, not because I don’t like them, but talking and engaging takes mental energy, and that is easily used up doing my job everyday (thank God He has given me the strength. So when I am quiet and don’t feel like talking, I am more than likely not in a bad mood, and it has nothing to do with you, I am just shut down.

I miss my personality; it is actually hard to recall who I am. I know I used to enjoy so many things, but I am not sure what they all were. I think that I will need to rediscover myself, and see what emerges when the chrysalis of illness falls away.

So, I am writing this not to whine nor for pity, but just to share what chronic illness can do to the core of who you are as a human being. My sister and I talk and share all the time about what we are going through, and how what we are feeling affects us socially and mentally. How each of us wants to tell everyone we see from our friends to people in the grocery store “You don’t understand, this isn’t me, I’m really someone else…”
But thankfully there seems to be hope. Treatment has been rough, and the different medications aren’t fun, but I believe that finally after possibly two decades of having this garbage in my body and not understanding what was wrong with me, there are answers. I have been told by my two doctors and even by friends and acquaintances that next year everything will be different. I want to hope so badly that this will be true, and if it is, I might emerge again, but will I be who I was or a little different? We shall see…

Weariness Sometimes Means Asking To Lean On Others

I made a decision recently to open my own Youcaring fund. It wasn’t easy and for some reason it feels embarrassing and like a defeat. But I came to the decision after a restless night of little sleep as I lay bombarded with worries and bills floating around in my head. 

This last year has certainly had its ups and downs and I know the long-term Lymies can relate. You hit the good times that can last days, weeks or maybe even months and you try and tackle more in your life; dust off your ambitions, work more (in my case try and supplement my job trying to do some temp work), exercise, socialize and get a taste of normalcy, which you always think will last. It’s not symptom-free, but better. Then inevitably something makes you crash again and the fatigue gets worse, the living in a fog, the pain, the systemic reactivity, “…..” Fill in the blank with whatever other symptoms. 

So often at work I will inevitably at some point say I’m tired. My one coworker commented the last time “you’re always tired”. Well, that’s true. Tired it seems is as much a part of who I am as my hair color. The only change is in degree. 

Where was I going with this? Oh yes, needing some help. This year my job description got changed to part-time, prompted by my request in January when I was having heart troubles and some other things going on causing me to just not be able to keep working full time. This has been a huge blessing and has given me some much needed balance and rest. What seems to be hardest on my body is long hours and not enough sleep. This is more taxing than almost anything. But, as much as this has been a blessing I do have bills and financial responsibilities to say nothing of all the special diet needs and the fact that our family of four Lymies medical expenses has passed the 300,000 mark. The financial stress has been almost as bad as the disease itself and I have found that my personal financial situation has deteriorated to the point that it is causing me sleepless nights and a lot of tearful prayer. 

What has been hard is the guilt I feel; on my worst days when my physical condition magnifies my mental state into an unhealthy place, I truly feel that it would be better if I were dead and not be the black hole that I am; draining money, joy and basically just being a waste of space. I HATE how lazy I feel most of the time. But, that said I am aware that I do desire to do more; to work harder, to contribute… And I really hope that time is soon. I hope soon, soon, soon the good days will just keep continuing. I won’t go deep into my medical treatment right now because that would be a long post in itself. But I am on a new treatment regimen.

Where was I going with this? Oh yes, needing help. 😜 so here I am, in a tough spot, still in treatment, better than a year ago but not there yet. So I am with a humble heart opening a fund to help with survival, believing that one day I will be able to live my dream and pay it forward and start a grant organization to help Lymies with their treatment. Until then, I will humbly ask. 

Jennifer’s Lyme Fund
My buddy today 🙂  

 

Is Lyme The 5th Dimension? Or, The Facets of Fatigue

I woke up just a little bit ago from what has become the usual afternoon nap, feeling heavy, toxic, groggy and doped up. I have that lingering feeling of fatigue that sleep does not seem to reach.

When did I become a napper? Even in the worst of my Lyme I have never been a person who can sleep well in the middle of the day; that constant buzzing brain activity keeping me awake no matter how tired I am….that brain that even keeps me awake during the night when my sleep-deprived body is trying to shut down. I am trying to remember when that changed, sometime within the last several weeks or months I think. I know that the last few weeks at work I spend the day caffeinating myself within an inch of my life and counting the hours until I can go home and crawl into bed.

I guess the good part is that I have also for the first time in my life (without ambien) been sleeping better at night as well. I think it is thanks to an extra dose of this little guy on top of my Zen, prescribed by my ND  

 
Who is a genius by the way. I have had trouble sleeping since my body entered this mortal toil.

In any case the Lyme journey is interesting in that you realize that there are not enough words in the English language for fatigue; I have had deep discussions with fellow Lymies on this subject and we seem to be in agreement. Fatigue is now a catagory with at least half a dozen subcategories, or levels if you will that you can start to identify by their nuances, kind of like the 10 point scale an RN gives you for pain.
*(Please note; all levels given here still fall under the catagory of “but you don’t look sick” and “you must be feeling better because you look well” by the outside world, who do not understand Invisible Illness/Pushing Through/Trying To Function Despite and My Good Day Would Be Your Sick Day.)

1. 😐 Meh. Getting by, managing, functioning, but underlying malaise and general apathy which can easily be disguised and overcome with a smile. 
2.😕 Bleh. Very much like level one but more underlying sleepiness, heavy limbs, still functioning but it is like wading through mud.

3. 😒Whahh. Insert all of the above only into limited hours of the day. May possibly spend most of the day resting, sleeping, being “lazy” to then emerge magically into Bleh or Meh for work or other activities.

4.😑 —–. Malaise, fatigue, walking zombie. Going through the motions, functioning (sort of ) in that you can get your body in motion and move through survival mode, but you promise no one that you will remember any of this….

5. 😵 whonk. No I don’t know what that word means, but it sounds like something hitting the floor. This is a day when you sit on your bed until one in the afternoon willing yourself to stand up, trying to work up enough moxie to just get yourself into the shower. I’m not sure if it’s because of POTS or not but I hit “whonk” fairly often right after a bath when I have drained the tub and have to stand up again. I look forlornly up at my towel and robe and standing back up just seems like too much effort. For Lymies whonk days are the days in between Meh, Bleh, Whahh and —-. These are the days you don’t see us, the days we bail on social plans last minute because our shoes are across the room and mock us with the distance. Remember even though we usually “look fine” and can pretty much overcome some Meh and Bleh days you don’t get to see us when we’re whonked, and we think the greatest invention in the history of the universe is the tv remote because it involves minimal movement and provides maximum entertainment.
So I hope you enjoyed my little off-the-cuff fatigue chart. Please note that any day can contain any of the above or combinations and anything in-between. Also please note that friends and family observing the functioning Lymie may not realize that even through we look fine, strange behavior, inappropriate responses, seemingly anti-social behavior, or just plain quietness or unresponsiveness can more than likely be attributed to the above. I know sometimes I will think back and realize I didn’t answer that person, or realize I spoke inappropriately or just came off dumb or unfriendly. It happens. We still love you, we still care, life is  just getting filtered through Meh-Whonk. 
My nap buddy ☺️