Living a half life

It’s 5am, I’ve been up since 2:30. Another night of insomnia where my mind and my body are betraying me again. My brain won’t shut down, and I’m having waves of heat, systemic irritation and an upset gut. My buddy edema which never leaves or forsakes me is also having a great party.  I have to get up at 7:30am for work and I am hitting a wall right now physically, mentally and emotionally. 

How do i keep going on? How much more of this can I take? And with this emotional crash comes all the old hurts and devastations, anger, garbage and the “lies” that are really true but just a matter of perspective (is my liver causing me this crisis?): I am such a waste of a human being. I’m a black hole in a world of people who have value. My health has cost about 100,000 and where am I now? Am I living and thriving? No. Do I believe the doctors that say they can help and keeping pouring money out while I still live a half life and feeling like crud, or would it be better just to stop everything and give up?

My body is angry. It likes being angry. It likes to punish me for every bite of food I eat. It likes revenge for any bit of fun I have or energy I expel…. The only difference is in degree. So I made myself soup tonight all healthy and diet friendly, save maybe for garlic. Is this the way it’s always going to be? A night of sleeplessness and misery for something stupid like eating a little garlic? 

Why won’t the fluid retention/autoimmune/pain/fatigue get better? Is it mast cell like we are exploring now? Is it lymph virus? Toxins? Liver? Kidney? Pancreas? Spleen? Leaky gut? Celiac? All of the above? Parasympathetic nervous system?….

I have been told all of the above, treated for all of the above and more (and we’re not even talking about the Lyme and coinfections anymore). 

What hurts right now is thinking about all the normal people who live “whole” lives and don’t know what it’s like to live with access to  pieces of yourself, to never be whole or wholly alive. On your good days skating by at 70%, having to choose between obligation and everything else that makes up life. Obligation always wins and then years of your life just pass by and you find yourself in the south side of your thirties and possibilities for the future keep narrowing with every passing year until they are a pinhole and the things you have never done and never experienced far outweigh what you have, and I’m not even talking about big bucket list stuff… I’m talking about life experiences most take for granted.

A tear just fell on my pillow. I know tomorrow is another day and I know realistically I will not be so negative when I’m not out of my mind with lack of sleep, grief and discomfort. It’s just tough as I am getting another wave of heat and agitation thinking about a full day of work on an empty battery…

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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 🙂  

 

A tough day

last night I took my first dose of progesterone;  as my doctors are starting to focus on treating the screwed up hormones side of this autoimmune madness. You are supposed to take it at night because it can make you tired, so I thought “yay it will help me sleep”. Alas it did not aid my insomnia but instead left me feeling tired and heavy throughout the first half of the day. Gravity was pulling down so hard not even matcha green tea, an energy drink and 3 shots of coffee helped much. (Yes I am supposed to avoid coffee and have done so successfully for quite a while, but when you’re desperate….) But I was alert enough to pace through at work, and goodness knows I am used to working fatigued.

  Unfortunately what did give me a jolt in the very early afternoon was pure adrenaline, source: verbal abuse. Being reamed and sworn at by someone for something that is not your fault simply because they are having a bad day, and because they have a longstanding pattern of lashing out in anger, bad language, blaming others when things go wrong (whether it is anyone’s fault or not), not listening to explanations (and really not caring to hear truth anyway)…..defaulting to being cruel, condescending, demeaning and sarcastic….( I could go on). Sad the men out there that put down and belittle women in particular, I will say it is not pleasant. What stinks is this causes me real physical harm with my pulse rate, my cortisol, my headaches, my GI issues and my emotional well being.

Sigh. I prayed through being a targeted victim of said person’s rage because I was the closest target, and instead dwelt on the truth……I am stronger. The Lord is on my side and I wear spiritual armor, none can touch me. 

I have been focusing on victory and overcoming lately; in my writing, devotions and prayer life. When the office emptied for lunch I put warfare into action and I took authority over said person’s office space by praising the Lord and claiming His dominion and authority over the physical space and spiritual realm. All is the Lord’s territory. I also put on praise music. It was a great spiritual cleansing both for myself and the space. Evil has no place where the Lord is praised.

I have a better peace tonight then I did earlier, but it is still hard to quickly heal mental and emotional wounds. Of course I need to recognize that we battle not against flesh and blood but against powers and principalities and spiritual forces. And the enemy does use evil selfish people to attack the Lord’s anointed. I am giving this one to the Lord and asking Him to do the fighting for me and take care of me going forward. 

He is my covering as I continue to regain my health and discover where His path leads next.

So my insomnia fatigue and swelling are up right now and GI stuff has been worse the last week, but spiritually I am gaining in the healing game.

  

My Old Friend again

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So I have generally been doing a lot better for a few weeks, which is good. I navigated the holidays decently…..not too may cheats. I thought I bounced back a lot better than I have in the past. But the last (maybe) two weeks I have had some insomnia, some more fatigue, puffier eyes in the morning, and increased acne. I have kind of ignored them because compared to my normal complaints and struggles these are minor.

 Anyway last Friday had a very rare girls night and ate (gulp) gluten-free pizza and ice cream. I did not bounce back so well and I have been feeling pretty toxic.

Went to my natural doctor today and it turns out it is my liver, again. Nothing caused by food, but I just didn’t handle it as well. Anyway, a few knew supplements and liver support and hopefully I will be feeling better in a few days.