With extreme fatigue I find it’s important to pace myself and to look for products, activities, and strategies that might at least over time increase my energy level or at least conserve it as much as possible.
One thing I am very interested in (especially since it has become more and more difficult to tolerate solid food) is Cannabis edibles. (I have been sampling a few that melt away to compare effectiveness, as all the pills I’m taking now are about to gag me).
While none of the products I’ve tried is the “real” stuff with all the elements of the plant, I know that as nutrients some of these products have at least some nutritional benefits of the hemp they are made from.
The above Fleur de sel Caramels with sea salt purchased from a small maker called Nutrient Bomb where I ordered on Etsy have an interesting flavor almost like black tea, and smooth and very stretchy texture. The seller also sent me a few of their other products as free samples. The pills I’m not really keen on (for the reason I mentioned earlier), but the hard candy squares were pretty good tasting and I couldn’t taste the CBD, although the flavor was hard to identify; somewhere between cinnamon, cherry, and mild menthol.
If nothing else, I’m trying to eat 1 caramel a day (I just got 9 to test out and see whether they improve my energy level or GI symptoms). So far I’ve only had 3 days to try them.
After seeing a new Gastroenterologist the day before yesterday I discovered that I have really lost alot of weight. I knew my pants were beginning to fall off me but it did’t hit me how extreme it really was until she mentioned it. I’ve started losing my hair too and it has on occasion literally fallen out of my head right in front of me without provocation! I have been finding it all over my bed sheets, clothing, etc., even on the carpet. I don’t know if it’s some sort of endocrine problem or what. It’s very strange, though. I hope it doesn’t continue dropping at this rate or I might end up bald!
My muscles often burn and even the slightest exertion takes everything out of m so I’m trying to conserve energy as much as possible.
I find that one of the best ways to do this is to literally sleep whenever I feel I need to and not force myself to stay awake because of the time of day or what I’m doing.
Sometimes I need to sleep alot more hours than normal in order to have the stamina to shower once a week, and since I currently don’t have anyone to help me I just can’t do it everyday as I would like to. I have to let certain activities go out of sheer necessity.
I find that alternating activities more often helps as well. Changing positions is very important if you are bed-bound because you are less likely to develop pressure sores, and if you have chronic pain and muscle spasm that’s triggered by sitting squarely putting pressure on your butt, then shifting to one side or the other can make things easier.
Being in pain in itself can wear down your energy and aggravate fatigue and it can make you irritable. I find sometimes pain creeps up on me before I realize it (because I’m so used to it), and all of a sudden I feel awful. I try to identify as best as I can when I’m starting to have pain and take my pain medication as soon as I notice it.
At times I have mistaken it for fatigue when it was actually pain starting up. I have now become pretty good at recognizing this pain aura and know when I need to take care of it to prevent a cycle of pain and fatigue from being set off.
As I also have some severe sensory issues I know about my body that I cannot tolerate any type of suffering for very long before I’m in all-out sensory overload. Symptoms I find are causing significant distress need to be taken care of expeditiously; no waiting around and procrastinating. They need to be treated now. This is something I was not able to get through to my GP, but it is absolutely crucial that any physician working with me understand this and respect it because it’s not that I’m being demanding or being a diva, but that I really can’t stand it.With the way I am wired, this is not a choice or a mere matter of convenience as some may assume, it is a need.
So if any of you readers are in the same boat it might be good to try to have a talk with your doctors about this as early as possible. If they are truly interested in helping you they will understand and try to accommodate you. If not, then it’s better to find out sooner than later after you’ve become invested in that doctor/patient relationship and find a doctor who will understand and meet you where you’re at on this.
Maybe I made the mistake of not telling mine this soon enough, but I think I was less aware of it almost 13 years ago when I began seeing him, so I’m not sure I could have made the connection back then. It has been a long process of self-discovery to fully understand how my brain and body works, but now I know alot more than I knew then and often learned things through rough trial and error.
It takes more energy for me to withstand protracted suffering (pain, stomach upset, near syncope, etc.) than it might be for somebody who does not have sensory issues. It’s as if somebody turned a dial way up and the longer I go with untreated symptoms the more excruciating it is. Someone who does not experience this themselves cannot ever fully relate, but a truly compassionate doctor will take your word for it and not expect you to jump through yet more tiring hoops that only make your life more difficult and deplete your energy.
My not being treated for my Dysautonomia since November, I’m sure, has taken a toll on me both physically and emotionally, and it occurred to me that it might actually be causing me to burn fat and muscle at an unhealthy rate. I suspect I’m probably in ketosis.
This state will deplete the little energy you have remaining very quickly. I’m trying to drink some Pomegranate juice I still have in the house in-between drinking my ice water, as Pomegranate is a super-fruit filled with anti-oxidants and has lots of nutrients in it.
When I need something from the kitchen I try to bring everything in there I need to at the same time, and everything back from the kitchen I need at the same time.
Although I’m in a power wheelchair I get fatigued very quickly just sitting in an upright position and the one I currently have has no neck or headrest so my neck can’t hold out unsupported for more than about 15 minutes.
Having the right adaptive equipment can make quite a difference. I’m working on getting a better chair that will support my body more equally and allow me to recline if I suddenly start to feel faint when I’m up.
Whenever possible I also try to put my forearms on the counter when preparing something, I now don’t bother putting dishes inside the cupboard like I used to, but keep them on the counter so that I don’t have to reach and strain to get a plate or a bowl after taking them out of the dishwasher.
Mental concentration for long periods of time tires me out, so I try to break up those activities and when I feel worse I stop and either lie down and totally rest or sleep, or I do something that requires less intense concentration.
I recently went onto Listia , (which for those who are unfamiliar with it is a site where you can get items for points rather than money), and bid on and won two adult coloring books. Being an artist who is used to drawing, painting, and making jewelry, when I saw these becoming popular my first impression was that is was a little bit wussy to color prefab designs.
However, as I have gradually lost some fine motor abilities in my hands when it comes to the type of art I have done for years and now find impossible and frustrating, I understand the appeal of these for adults with chronic disease.
I think what it is that is so freeing about these is that certain types of executive functioning such as planning out where to position an original design on paper, perspective, and composition require the artist to expend alot of energy.
When you are healthy you may not even be aware of it, but when you’re ill you definitely feel as though the act of creating (the very thing you love) becomes a chore of monumental proportions!
Not being required to do these things that tax your brain and attention gives those of us with chronic illness a break from having to plan things out to the 9th degree, an activity which can sometimes just be too much, especially on days when we have alot of pain and/or fatigue and brain fog.
I would love to hear from readers what you do to conserve or increase energy. Please feel free to leave a comment and to subscribe. 🙂
I sit here trying my best to brush out the mats from my hair that have been developing because I have to sleep more than I used to and the fatigue and muscle pain some days are just too much to brush it. Such is life for those with chronic disease and no caregiver at home to help with these types of things.
I get through each day on a wing and a prayer, hoping every day that something positive I’m working towards will come to fruition. If I could write all my own orders and prescriptions I would, as it seems now that getting everything I need depends on some MD’s name on some form or another and my doctor has decided somewhere along the way to become one more obstruction along this already bumpy road I’m traveling on. He finally wrote me back on the patient portal today to say that he couldn’t go along with the continuous saline infusion, and that he’d done all he could with home healthcare.
I can barely bathe myself although the shower bench helps somewhat. I still can’t reach everything on my body, and that’s not me, and its not laziness either. I’m very meticulous about getting clean and I don’t like it being half-assed and I like to shower everyday, but without help I simply don’t have the stamina, and because of my stiffness I find it hard (and on some days impossible) to reach my toes to wash them. I can’t reach my back even with the long handled sponge thing I got through a local non-profit organization because my arms just won’t bend in the right ways to reach where I need to reach.
Daria, the Care Coordinator told me last week on the phone that they would be glad to pick up my case again and are just waiting for my doctor to write the order and submit a plan, so the obstruction isn’t coming from them, nor from my insurance. It’s coming from my GP. Why does it not bother him that I am home alone without proper help so that I can do the activities of daily living? After 12 years you’d think he’d care that I’m here struggling and using up precious energy reserves I don’t have just to do the simplest things.
Nothing has really improved in my functionality, so why is that call to discontinue services? If anything it calls for increased services, as this disease isn’t going away in 6-8 weeks. I don’t want to deal with it either but I don’t have that luxury of just ignoring the whole thing. I still cannot do my own grocery shopping and the guy who was helping with that is getting more and more lax, getting 1 item when I ask for 3 of something, 2% milk when I asked for whole milk, fully cooked low-sodium bacon when I asked for the applewood smoked bacon that he got the last time, and running out of things and being SOL because I don’t have things needed to complete a recipe.
I find myself time and time again having to prostrate myself just to have the basic necessities and get through life. I have no family to speak of to take care of these duties, and in order for the social worker with the home health agency to help me apply for longer-term help my doctor needs to get me recertified with them. I really need a personal assistant and in order to get the Independent Care Waiver through Medicaid so I can get one he needs to send his doctor’s notes to Shepherd Spinal Center so I can get the pressure mapping evaluation for a wheelchair that will support my whole body properly. The paperwork for the Independent Care waiver asks for the wheelchair specs (in addition to other help I need) and it has to be specific, but Shepherd can’t schedule me until he sends the doctor’s notes.
In addition, the Modified Barium Swallow Test he ordered in December must be updated because the December prescription is too old. I have asked several times yet he has not done that. I told him that it’s becoming too much to have to give these constant reminders and that I need him to take some initiative and go to bat for me as my GP.
What the hell have I done to deserve this? I’m trying not to have any more medical neglect and make things come out better for the second half of my life but nothing I say seems to make a difference. No amount of self-advocacy does any good anymore. It’s bad enough not to have any control over the physical processes in my body, but then to have no control over everything else is just too demeaning for words.
It seems that these doctors see me as a non-entity and my voice is of no consequence in anything that happens in my care. They just do whatever the hell they want whether I like it or not and I’m not supposed to have any say in the matter. Well, fuck that shit! I’m a grown-ass woman and it’s my decision what is done with my body and not! They are only consultants (I like that term better than doctor and I think Australia and the UK has that about right). Who died and made them king!??? These doctors are supposed to be working for me, not the other way around. I’m getting really fed up!
I asked my GP what exactly happened that one minute he was ready to treat my Dysautonomia with the continuous Saline infusion and now he’s not and I asked if anyone at Emory had scared him out of it and if so I wanted to know whom.
If I find out Dr. M. and/or his buddies have anything to do with this I will be a ball of fire and will not rest until justice is done. I don’t need this right now as I’m trying to get to the bottom of my underlying condition and get help for it.
Just like I said to Dr. H., if a patient is suffering then treat it! It’s as simple as that. There is no excuse to sit there and allow someone to suffer when there is something that can be done to alleviate it and it’s relatively safe.
I found that this mode of treatment works for me so I should have access to it if that’s what I choose. I’m well aware that it won’t cure it, but if it will give me more energy, help my bowels move more regularly, improve my appetite and reduce GI problems, make me less thirsty all the time, stabilize my blood pressure, and make me feel faint less often then it’s worth it to me! He has given me not one good reason why he should not.
The port can be put in at Emory’s outpatient center, and home healthcare can do the infusions with their nurses, so frankly what’s the problem??? It’s not like I’m asking for a breast augmentation, this is something medically necessary so I can have some quality of life and it may even prevent an emergency down the road!
He has not come up with a better idea and unless and until he is willing to go out of his way to do the amount of reading and researching I do each day to help come up with something better then as far as I’m concerned he just needs to defer to me.
Besides, I always see the trajectory of things. It’s one of those special perceptual talents I have. At this rate I will probably end up back in the hospital. That is not the preferred way to do this. This method is supposed to be proactive, but left untreated, persistent dysautonomia can be dangerous and cause all sorts of complications. With the blood pressure readings they documented at Piedmont it would be medically irresponsible not to treat it at this point. Maybe in the past it wouldn’t have been as crucial, but now that we have that information from my hospitalization records (and I assume it’s been entered into the electronic records system at Emory) it is really indisputable.
If Dr. V’s hypothesis is right about this whole thing being caused by my Sarcoidosis then I will most likely be considering other treatments that are given by IV such as antibiotics or IVIG, and having that central line will take alot of the demand off my stomach and GI tract in addition to being useful for the Saline treatment. I’m taking about enough pills by mouth right now. If I need to switch from Tizanidine to Baclofen for my spasticity that is the quickest delivery method there is to have it work immediately. They can draw blood from it and do a number of things that will make life easier for me.
If it’s not my Sarcoidosis that is the underlying condition differentials could be one of several Atypical Parkinsonian Disorders such as Multiple System Atrophy (MSA) or Corticobasal Disease (CBD). It was uncanny how many of the symptoms I have that fit the description of either. It was also interesting that the neurologist who gave the lecture in the Youtube video said that they have some symptoms in common with ALS. If I have one of those then it makes perfect sense as to why one might think it was ALS initially. Apparently these other two are even less publicized so they can often go longer than ALS to be detected and diagnosed. These can cause Dystonia, Dysautonomia, and Myoclonus.
Today I was in such agony I could hardly stand being conscious. It was one of those days one would have to die to feel better (and I’m sure those of you reading who have chronic illnesses know how that is).
My face and body were hurting really badly (that same “feel the burn” feeling I had back in August along with inflammation), I had alot of nasal congestion, the roof of my mouth ached, I was nauseated and had colon spasticity. I had to take Tizanidine and my Tramadol and Ibuprofen and sleep it off before it finally let up. I also had more fasciculations in my big toe on the right foot that lasted quite awhile after my nap.
It’s Wednesday and still no call from Radiology to schedule the Gallium Scan. I called and left a message for the nurse to call me and let me know what’s going on and when I can get this done. I hope Dr. V. didn’t go on maternity leave and forget about it.
Yesterday I got stuck lying on my back and couldn’t turn myself for at least 10 minutes and nearly had another fall when I finally managed to roll my bottom half off the side of my bed. This happened alot in the Summer and Fall and I thought it had stopped but looks like it was just taking a temporary break.
I’ve also noticed my jaw dislocating, and cracking in my jaw and in my cervical spine over the past week or so. That needs to be looked into. I asked him to order an MRI of the jaw and sent him exact specs for how that order should be written to get the best view of it. We’ll see what he does with that. I also asked him to get a copy of the first imaging that was done 10-12 years ago by the oral surgeon at Emory which showed I had TMJ so that we can compare and see if there has been further degeneration.
If I take the time and energy to go in to see him and come up empty-handed I am going to be pissed! I expect these orders to be done, and I think he should also have reached out to the movement disorder specialist I’m seeing in July to help facilitate and give him some history and try to make this as easy for me as he can so that the experience will be fruitful and so I’ll be treated with respect.
If my GP conveys to the movement disorder specialist that he’s behind me 100% then it is likely that I’ll be treated well and that the specialist himself will put 100% into diagnosing and truly helping me so that I can come home and not have to continue to prove myself ad nauseum as I have had to up until now. That is probably the most tiring thing I deal with on a day-to-day basis and its high time that my condition be given the credence it deserves. I did not ask to be sick nor to be poor and I believe everyone should have access to the care they need for their conditions no matter what their station in life. It’s just a matter of dignity and humanity. At the very least these doctors should take care of these medical problems expeditiously and give me the best quality of life possible under the circumstances of what my limitations are.
Tomorrow I am seeing my liver specialist. My liver enzymes have been elevated chronically now for about 8 or 9 years. I think at this point they need to do more than monitor it. A test result doesn’t keep cropping up like that for that long for no reason. It’s there to tell us something of significance. If it’s not my Hepatitis B reactivated then they need to find out what else it is. Maybe my liver can elucidate some useful clues in solving the other stuff.
I’ve pretty much run out of patience with all the diddling around and delay tactics. I’m quite sure if I had money and top of the line insurance I’d have a diagnosis by now and would have been on treatment for years by now, and maybe I wouldn’t be near as disabled as I am currently. There’s alot of rationing the doctors never tell you goes on which determines how aggressively (or not) they treat a condition.
The poor die silently of medical neglect every day and for the most part it never makes the news. I do not want to become one of those statistics.