I work part-time, now, because the pain clinic said I could not work full time. But Financially part time isn’t working for me. Either. And they do not want me on disability, for whatever reason.
Fact is I need to earn money. Preferably online in the comfort of my home where I control the enviroment and preferably a writing job. That would be the ideal. As it is I’ll take anything. Looking for admin part-time, full-time. Anything but sales. And work form home as well.
Here is the thing I missed a day at work. Because I had to. But I don’t think they get I had to. I don’t think they get pushing though the pain and working anyway to slammed by the pain and completely non-functional. They just don’t. I don’t expect them to but I get the feeling they think I am amusing myself on my sick days instead of curled up in a ball of misery. My sales have been poor because I get in a lot of pain and just do the transaction before me… and not anything else. And then when I try I am all migraine confused, befuddled and aphasia brained… it doesn’t make much sense and no one is buying what migraine brain is spitting and stuttering out. I can’t so sales anymore. Not with this pain crowded brain.
And then the guilt hits you. You let down your team. And they were likely very busy. Always the guilt.
And then you think they will find a reason to fire me. No one likes the weakest link. The sick one. The one that can’t think through the pain. Struggling to pick things up slowly. But missing too many days.
I just want to find a place and a job I can excel at with my disability. That I can feel good that I did a good job. Excel at it like I used to excel at every job.
Why don’t people pay me for my exceptional writing?
Today I am going to talk about migraines in University and College. My migraines began when I was in university and were well into chronic by the time I was in my Masters. Due to those migraines being as frequent and poorly treated I did not go for my PhD and instead entered the work field. I am not going to say going for higher education is easy with chronic pain, because it is a challenge. However, it is also rewarding. I believe it takes a lot of determination.
In University when my migraine where chronic my main issue was getting to class on severe days. Intense nausea and vomiting that was a serious issue with my migraines then. Having concentration problems, speaking problems, aphasia and brain fog. A few of the medications I tried made my brain fog substantially worse which affected my work which was obviously a major concern. I remember a paper I wrote on one preventative and when I got it back, I had passed, but it was far below my usual grade and standards. When a read it over, I could see why. It was clearly written by someone who had no focus or concentration. I knew the medication had been making me groggy and dopey but until that moment I had not realized how much. I told my doctor if I could not Function there was no point in taking it. So medications themselves cause us additional issues. I also very clearly remember due to brain fog, aphasia and pain that it took me far longer to edit my Master’s thesis than to actually write it. All those errors from writing and researching with migraines were all wrapped inside it, and I had to weed them out (you guessed it) with migraines.
Remember going to university or college is a significant change in your life. Significant changes can cause increases in pain, extra emotional distress and a great deal of stress. None of which is good for migraines. It is in our nature to conceal our suffering from others in order to function but this often creates a sense of isolation and we no longer have our familiar support network of family and friends to fall back on if we are living somewhere far from home. This time in our lives strain our coping strategies because the methods we used to cope with our disability are not always effective in our new environment.
This is a reprint of a post I made for Migraine Checked about suicide. Since this is the anniversary of my second suicide attempt. Unmanaged pain is a very dangerous thing.
I want to talk about the very serious topic of suicidal ideation and suicide. The stigma with suicide though still runs rampant though and while I have seen so many people understand this death and so many others were caused by depression… others feel they can judge those who die in this way. They say they are selfish. That they should have just got help before it got that serious. That they should not have let their families suffer for their pain. I have seen this on twitter and I have seen it on Facebook. I have seen it recently and I have seen it before and I will see it again. “Suicide does not take the pain away, it gives it to someone else.” And people think these things because they do not understand depression. And because they do not understand suicide. And they do not even understand the two do not necessarily have to go together. Physical pain alone is a trigger for suicide.
This is one thing I want people to understand about suicide:
In my case my suicide attempt in 2010 was not this spontaneous occurrence. With profound pain came suicidal ideation that I fought off every time. Bravo me. I survived more times than you can count. Was that then selfless of me or just survival instincts? We want to live. We love people. But there was a war within me and one I was losing.
There is a thought process that we go through during these times. My existence was torture and it seemed Unreasonable that I should have to exist this way. Irrational that I would choose to exist in that pain and in fact choose to make it worse. Why would any sane person do that? And all avenues I had tried to reduce that pain had been used up. Society, my employer and my doctor at the time were all by their lack of caring and disinterest stating they wanted me to suffer. So this was my existence. Forever. And forever is a long time when you are in pain. A very long time. You see how endless and indefinite it is. If you just knew how long it was you had to go on. You begin to think how nice it would be to have a fatal stroke because… that would not be your fault. Then you imagine if you could kill yourself but make it look like an accident then no one would have to suffer with the knowledge that you had killed yourself. Clearly, I knew I was suicidal but these were Bad Days with Bad Thoughts. And my bad pain days were usually status migraine stretches, so I just had to wait them out… until I could get back to normal pain days. Normal hell. Then my work place would give me these ultimatums. If you do not work every day… we will do something unpleasant. And that would cause more pain, more stress, more suffering. Until that last ultimatum in that last status migraine…
Do not ever tell me someone is selfish when they are suicidal until you have been in that mental space. Until you have gone down that slippery slope of thinking and reached that line… and crossed it. You have no idea what goes on in that space. No clue. We do think of the consequences of our actions. It is just that first, we understand that grief will end and our suffering has no end unless we make it end. That is the first misconception our brain convinces us of. Well with physical pain we are very aware there literally is no end. But pain has a way of consuming your capacity to see reason as well, but that is another rant. (I will just say extreme pain warps reality as well) Second, that our families will be better off without us. We are a burden after all. We are holding them back. Imagine how much different and better their lives will be if we removed ourselves? Of course they would not Want that… but if we did it for them, it would in fact be better after they grieved for us. I myself was sure of this. I also knew my insurance company covered suicide so I knew financially some of my expenses would be covered… an added bonus really. Frankly, I assumed my existence was really rather worthless. Just this endless mass of pain that has no real meaning and worth. Except essentially to torment me… and That seemed like the ultimate madness really. You can rationalize suicide. You can slide down that slippery slope until you have essentially made it make Perfect Sense. I even explained it to a therapist after the fact and she could not even argue against me… as in she could not explain to me how my reasoning was not rational. She should have been able to because there should be flaws in the reasoning but we can really have quite an in-depth rational going on.
And so, no point arguing is there? There are finding reasons to live I find. Finding ways to live. Finding what you need to change and figuring out how to do it. Living until living works for you. Seeing a psychologist is something I chose to do to help with pain management because pain management is what I was severely lacking in. And it was damned hard. I was traumatized by the suicide attempt. I think sometimes people think an attempt is just a cry for attention but in fact it is just… didn’t get it right for whatever reason. In my case poor timing on my part. I know I could have had good timing and not be here right now because I had done the rest of it quite well. But I will say… it should be taken very seriously and the cause taken very seriously and the treatment taken very seriously. In my case it wasn’t really. The pain wasn’t treated. The work situation remained. And I became depressed from it. But after that… when I shook free from that I was motivated to change my doctor, see the psychologist, start managing my pain in new ways and took a long leave from work. I suspect I might not be here if I had not made those changes. Pain like that when not treated can really consume a person.
In the end when you survive a suicide attempt you are always at risk for another attempt. There is less of a chance of survival with a second attempt. We have to make that choice to understand the future does not mean endless suffering. The future can bring with it positive changes if we look for the right solutions and get the right sort of help that we need. It is not always easy to find and it is not always an easy solution… sometimes it is a damn hard fight, a constant endless battle to manage our suffering… but better than it would be with no help at all. With no hope at all.
I had an MRI today and the clanking of the machine triggered a migraine. I watched the visual aura of a vibrant violet color warp over the tube… like a clenching fist, open and closed, open and closed. The pain crackled in as the clanking beat into my sensitive ears. The aura persisted as it does, switching to both eyes and a cascade of multi-colored dots arching from one eye to the other. So it would arch over one vision completely then start in the other and arch over it complexly and repeat. I was transfixed because I literally had nothing else to stare at.
And I thought wouldn’t just be grand to have a migraine free day. Hell, a pain free day. Just no pain at all.
I literally have no idea what this would feel like I have been in chronic pain of one sort or another since I was young. I think of it as an absence. I think you would simply not be aware of your body. Like, I am aware right now of my neck pain, my migraine, my aching knees from how I sit, my shoulder pain, and the overall ache of FM. To have no pain is that lack of awareness. To simply be in your body without being aware of it, unless you are hungry or something or tune into your body during meditation. They, those people without pain, as Heidegger would say, Being-In-The-World, they are all Dasein. Whereas we are all being-in-the-world-in-pain. It is a totally different phenomenological and existential experience. Ask anyone with pain to describe their perception of their being and their perception of reality and you will soon tell… we see everything differently. And I think I lost what it is like to just Be in the World. I don’t think I have the physical memory of it. I have vague memories of Doing things that I can no longer do, but not what that felt like.
And so we are beings-in-the-world-in-pain. In other words we live the chronic pain lifestyle. We don’t know what it is like without that lifestyle because we have lived it for so long. Like the rules. Pace yourself… or you will regret it. That is like Rule 1.
And I pondered in my MRI that day what I would even do with one free day of pain.
The answer being simple enough to be honest. i would do the things I would normally do but at a faster speed. I would clean my house in a day instead of slowly over two weeks. And I would do it thoroughly. As long as this magical day of pain didn’t have pain Consequences. Because doing things always has consequences. But if it didn’t I would totally do that. After that I would go book shopping the Same day, like that would ever normally happen. But on magically pain free day it would. Then i would gather a bunch of friends and have them over for a BBQ. Because I wouldn’t be fatigued out of my mind from the pain and I wouldn’t have exceeded my pain limits by the end of the day. So why not get people together and have so fun! And i would have one or two too many beers and have a grand old time. And I would have no regrets. No pain consequences. It would be a Good day.
I am new to aromatherapy and since I have migraines I have been very wary of it due to scent sensitivity and exactly that as a migraine trigger. But I have been equally curious about it as well since it seems like it could be very soothing and a great complementary treatment to try. I know this because certain scents like ones I have from migraine balms are very pleasant to me. But also I am very new to the process. So I had to dig around one of my go to sites to look for some helpful migraine essential oils to give me a start.
A question came up among-st my friends in the migraine community and chronic illness community. Well friends that are in that community. And one had been asked if she would give up one condition she had or migraines and she picked the other condition. Another commended she would rather give up another condition as well.
I have Fibromyalgia, chronic migraines, depression… and some well manage conditions. Of the three of course I would be rid of them all if I could but to choose I would choose the chronic migraines.
Here is the thing, I have had depression on and off my entire life since I was a teen. It strikes in bouts. It can be severe, moderate or mild. It can cause serious problems like in university my inability to want to eat, sleeping all day long and having a hard to getting to my finals… and flunking out. I took a year off to get that depression sorted. Because the Paxil he put me on made me worse not better.
I am getting to Botox soon. I will Be done. I don’t effing care if it takes three rounds to have any potential effects. I want to start now to see if I get those effects.
Just have to get the damn insurance company sorted out with its pre-authorization to authorize me to use it for medical purposes. Which if it is late then my appoint will have to be back up further. One way or another it is Happening.
Here are some of the side effects you might want to watch out for :
The injections are slightly prickly or stingy and take about 5 minutes to complete.
It is possible, though rare, to have an acute allergic response so you should stay in the clinic for several minutes after the first set of injections.
Less than one in ten patients experience each of the following side effects:-
ā Worsening migraine. This can begin within a day or two of the injections, usually lasts a small number of days. It can be treated with triptans and/or regular naproxen 250 mg or 375 mg three times daily after meals.
ā Rash, itching
ā As with all injections; pain, bruising, bleeding or infection where the injection was given are a possibility
1. Drooping of eyebrows or eye lids. This begins after a couple or a few weeks and can last for a small number of weeks.
2. Muscle weakness, pain, cramp, stiffness or tightness
3. Weakness and pain in the neck. This begins after a couple or a few weeks and can last for a small number of weeks. It can be treated with regular naproxen as in (1) above.
Less than 1 in 100 may experience:
ā Difficulty in swallowing
ā Skin pain
ā Jaw pain
ā Swollen eyelid
If you have any difficulty in breathing, swallowing or speaking after receiving Botox contact your GP immediately.
If you experience hives, swelling including the face or throat, wheezing, feeling faint and shortness of breath please also contact your GP immediately.National migraine center
I never experienced any of that when I went. However it did make me feel like crap. Immediately more pain and a wicked migraine. And that seems to be common. That stick needles into a head and oddly enough it causes so aggravation and pain. The migraines don’t agree with it a go a little nuts. The day of botox, isn’t a pleasant one.
Just how effective are we looking at here? Everyone benefits? Only 25% or is it 75?
The goal is not to become completely free of headache or migraine; but to improve quality of life, and to convert migraine from chronic to episodic.
About one in four patients do not respond; one in four respond well to the first or second set of injections, and half need more than two sets of injections to get a good response. Studies show show that 47% of patients had a 50% or greater reduction in the number of days with headache.
The biological effect of botulinum toxin on nerves takes several days or a few weeks to work. You should not expect chronic migraine to improve properly in less than 4 weeks. Some patients do not start to improve until after their second set of injections which is given 12 weeks after the first set of injections.National migraine center
1 in 4 patients do Not respond. Which would be me last time. And why every neuro since believes I won’t again. Other take time… and that is the category I might be in since I only ever did one round of noresponse. Anyway 47% get a 50% reduction in the number of migraine days. That impresses me. Hell at this point I would take a significant reduction in intensity.
So I have used many a product for migraine balms and I Have many a product around the house. But This one I use every freaking day I love it so much. It is an oil and you only use a few drops. It can be used for many different things and even added to bath water.
I have used different sorts of migraine balms. Some with menthol and some with eucalyptus, lavender and things of that nature. I prefer the stronger ones. That sort of strong tangible menthol touch. Some are goopy and make your face sticky… which I rather do not like. Some are more soothing, lotions but just do not seem strong enough. I find the oils rub in just right, with no residue and are stronger.
The product I have been using is Hagina Japanese mint oil. I use it on my forehead, temples and along my upper jaw area and my neck. So soothing. Although if I am also doing ice on the neck then I avoid the neck area. It is by far the best product I have used topically for migraines. I mean, not like it is aborting it or anything magical like that, but it is soothing in just the right way especially when I cannot take medications that day or medications fail to take all the pain away. I especially like it just before I leave the house when I know the pain is going to be all hyped up.
My spouse found it for me at a local health food store along with another one that is too mild. He wasn’t sure which one to pick up so I got both. The other one is more aromatherapy and doesn’t do anything at all and sometimes can cause issues in-itself due to scent sensitivity. This one is minty for sure, but I never have an issue with that scent. And the sensation is just perfect for me.
Not recommended for full body massage.
Heating & Penetrating effects for Spot Treatment in massage, helps promote blood circulation, chest rub for chest and head colds, relieves tight muscles, cramps. Also, helps relieve rheumatic pain, helps treat sprains, swellings, dislocations, sport injuries, headaches.
A few drops massaged into a specific area:
Helps promote circulation.
Relieves tight muscles and muscle cramps.
Useful for injury rehab when treating sprains, strains, swelling and dislocations.
Headache relief when massaged on to the temples and the back of the neck.
Rub on the chest for head and chest cold relief.
Sinus congestion relief add a few drops into a basin of hot water, inhale while keeping eyes closed.
Here is a post about MAV (Vestibular migraines) I made.
I fell going up the stairs today. I had felt a little wobbly and dizzy. Off-kilter as it was. Then just started with the internal vertigo and somehow ended up planted forward on my hands and knees. I got up and began to go up and slammed into the wall, which likely accounts for how I fell to begin with… as soon as you get that falling to the side sensation your body ‘compensates’ poorly by flinging you in some random direction which usually makes the whole situation worse. Needless the say I was rather carefully holding the wall on the remainder of the climb.
This is the best imagine I have seen to show a person what it feels like to walk with vertigo. When you get a drop attack… the ground feels like it is gone beneath on leg and you just fall in that direction. And this is sort of the mild version of that type of vertigo… the ground feels like moosh. Like every step you take your feet are sinking into the ground just a little, or a lot, and the ground is shifting a bit as you do. So it is very unstable. And you can lurch and stagger but either way, you are careful when you walk. And it is common for me to get this also when lying down so I feel this dropping sensation in a constant pulse… drop, stable, drop, stable. Drives me nuts and impossible to sleep like that.
It has not been a fun couple of days for me. Migraine wise it has been around an 8. And the nausea was rolling and rolling. My cat tossed up on the floor. And when I tried to clean it up… well I rushed to the bathroom and threw up. Three times before I managed to finish the task. Needless to say my stomach was ‘unsettled’. And that stayed into this morning where the nausea continued with the migraine. More vomiting. Zofran a medication for anti-nausea simply not cutting it. I went into work 2 hours late, which made me feel cruddy. And then three up three times while actually at work, but not as much, if that means anything.
The last six months my nausea has been insane. To the point of being really unable to eat and fighting to keep things down. No appetite. Losing weight. And it disturbed my doctor so she ran tests but they came up fine so one can only conclude a severe bout of migraines that happened to have severe nausea. That tapered off though so it isn’t as bad now. But it could be. We can get horrible nausea and vomiting with any migraine. With every migraine. We simply do not know.
When I was younger I had this quite severely as well. it was quite common. I would get violently sick. Lose everything in my stomach and just keep vomiting until I was gagging. But it meant medications like triptans and anti-nausea meds had no chance at working. So that is when they changed me over to the melting triptans. Give them a chance to do something before the vomiting kicked in. Eventually after some years this became less of a symptom and in kicked the diarrhea instead… not exactly an awesome trade.
It seems cyclical with symptoms. Rising and falling and just messing with us. A co-worker asked, due to my missing work due to all this getting sick business… if I should even Be working. As I am Already part time. I don’t even know. I really don’t. I try so damn hard but I can’t prevent violent nausea and vomiting. Or vertigo. Or 9 level pain. Or blinding auras.
I can say, this is one of the worst symptoms. It is so vile. I loathe getting sick so much. I hate that the nausea itself completely steals my appetite such that when I start to eat… yeah, don’t even want it anymore. Food becomes this necessity and not a pleasure. I have been drinking meal replacements at lunch because I know I am not eating enough so a liquid diet is better than nothing.
FibroFlutters - Support Group blog/archives for people with Fibromyalgia, Chronic Pain, EDS/Hypermobility, Mental health, Chronic fatigue/Me & Invisible Illness in Sunderland that offers friendship, support & advice in NE UK (and across the globe)
FibroFlutters - Support Group blog/archives for people with Fibromyalgia, Chronic Pain, EDS/Hypermobility, Mental health, Chronic fatigue/Me & Invisible Illness in Sunderland that offers friendship, support & advice in NE UK (and across the globe)