Guys, here’s the thing. I’m tired. Not like “I might grab a nap” tired. More like “I would like to lay down, and become one with the ground and let flowers sprout out of me” tired.
I have to admit that I’m a fighter. I’m a single female with a house, yard, full time job, two dogs, a cat, some fish, a couple hobbies, anxiety, depression, and an autoimmune disorder.
The bit that gets me is that part of my job is helping piece together information on death investigations. There is nothing more soul sucking than a steady stream of autopsy reports, except for maybe watching the slow demise of another human being. That’s eight hours of my day. I love my job. I feel committed to it, and we do good work. It’s just so hard.
When I come home, I have lovely beautiful friends who need me. They need me to support them, and have their backs. They have problems, and I feel like I should help, but I’m tapped out. I’m dry and crumbling. I want so badly to help, but my well is dry.
I don’t know what to do anymore. I don’t have anyone to tell.
So why is my Friday child confused and behave as though he’s Wednesday’s child instead? B doesn’t stick to the old English poem. He got confused along the way. I know exactly when that was. When he was twelve days old and caught the dreaded meningitis.
That was the worst of times.
We were told he wouldn’t survive the night, but he did. We were told he would never recognize us or smile or manage any basic functions, but he did. I won’t bore you all with the setbacks, the heartache every night, the months spent in hospital, how none of our friends visited, the long, drawn-out wait to get home.
Those are for another time. Maybe.
This post is about now, this minute, how I am feeling. I have never written anything like this down before, but I am an avid follower of Aunt Becky and she told me to, in all her posts about Band Back Together.
I don’t know how to make this a nice flowing post rather than a list of illnesses, surgeries, appointments and setbacks. I suppose I’m having this issue because that could be how you would sum up B’s life so far. I know that’s how others see him. When we meet for a Girly Catch-Up date, it’s never, “how are you all?” it’s “what’s B having done now?”
My friends are great but I’ve been labeled The Coper; or she who deals with all that life throws at her. B is labeled as ‘poor thing.’ Not a great label for an intelligent, reasonably active eight-year old. We have settled into this comfortable way of coping that I don’t know how to let people know that sometimes I am not coping very well.
Maybe Band Back Together will be the friend’s ear I can bend.
Anyway, back to my child of woe.
We were lucky to get pregnant with B and we were lucky to have a nice ‘normal’ pregnancy. B was born on his due date and then things started to go wrong.
B was labelled with Torticollis and Talipes within the first few days of his life.
It threw us but we had just come to terms with all of that when B caught the dreaded Meningitis, caused by late onset Group B Strep. Again, not to bore you with that hell of a first 6 months, B managed to cling on and then thrive. He was considered a ‘floppy’ baby due to, what we figured was the brain damage caused by the meningitis, so all his milestones were delayed. He also couldn’t work his muscles properly, including swallowing, so B was fed through a gastrostomy.
When we thought we were through the worst year of our lives, we were hit with another side swipe, B’s hip was dislocated and deformed, it needed immediate surgery. That surgery was deemed successful and so we carried on. We even began to relax a bit and focused on having some more children. B still had some problems, mainly with his muscles, but we had got him off his gastrostomy and, again, he was thriving.
So, we relaxed and concentrated on other issues, such as my infertility and the long rounds of IVF, but again another story for another time.
During these years we were eventually blessed with twins Z and E. All seemed well in our household, the girls were healthy and B was doing well.
Then, when B turned 6 we were knocked over again by the diagnosis that his hips weren’t right still. So major surgery followed, which involved B being in an hip spica for 8weeks (not great for a 6yr old boy and a mum who also has 2yr old twins to look after) and wheelchair bound for many months more.
However, we all survived, well I am a’coper’!
B was just beginning to get mobile again when a doctor noticed his face was looking wonky.
A year of maxillofacial appointments followed which ended with us being knocked over again by the diagnosis of Juvenile arthritis. The arthritis had been attacking his jaw joints for some time unnoticed and had now deformed them to the point of major facial surgery required.
However, they cannot do this while the Arthritis is active, so cue major arthritis drugs. Now B has to have weekly injections, for years, that are lowering his immunity, great.
However, we are coping!
Now factor in his hips update as well last week and we are cooking! B’s hips have, again, grown wrong and further major surgery is required, probably in January. Again my lovely son will be wheelchair bound because of his hips, injecting for his arthritis, struggling to eat because of his jaw deformity and tiring due to his muscle issues. Again, I have taken on this diagnosis and have dealt with it and I am prepared for it. What I didn’t expect was for his orthopaedic surgeon to say that things don’t seem quite right with B’s muscles and they seem to be getting worse.
Well, yes, he has hypotonia from the meningitis. obviously his muscles are not right.
That is not what he meant, the surgeon knows of B’s past history and thinks there is something else affecting him.
So that is why my gorgeous, bright, loving son is now being tested for Muscular Dystrophy and the medical view is that he probably does have it.
WHY?? I mean, hasn’t B gone through enough?
Haven’t I gone through enough? Haven’t all our family gone through enough?
B has, at the moment, hypotonia, hypermobility, hip problems, arthritis, jaw problems and now possible MD. Any 1 of these diagnoses would upset a parent, my son has all of them.
I am not coping any more, outside it looks like business as usual, but inside I am crumbling. I look at my friends’ children and, selfishly, wonder if I can pass on just one of B’s problems to them. Why did he get all of them? Even the doctors can’t believe how unlucky he has been. When friends worry about their child’s broken wrist, I think that I wish B could do cartwheels and break his wrist like that as well.
Then I feel bad for not having sympathy for them. Then, I overcompensate for my guilt by offering help and being the friend they can always turn to. They take that help because they know that I am a coper whereas they aren’t. They make half-hearted promises of help in return but, they have their own families to look after and B and I would need too much help. My hubby is pretty hands-on with the house and the kids but he has never been to a hospital appointment with B, never.
I feel it is B and I against the world sometimes.
So, there you have it, my child of woe.
This has been quite therapeutic, I feel like I can now go out into the world and carry on ‘coping’ again.
I push myself everyday often beyond my better judgment. Lupus and Sjogrens are not diseases that I can beat into submission nor is the depression that comes along with the chronic widespread pain.
Yes, I want to do more, but why can’t you see I can only do so much and some days a lot less?
You need to know something else. When you don’t make the time to visit me? it breaks my spirit in ways I cannot adequately describe. I may be broken, but I still have value. I am worth the trouble it would take to make the trip to my house. I know you love me.
I wish you knew how much I need you to recognize this won’t go away by ignoring it and by default me.
Spent the last two months hoping against all hope that my mother and father had not actually abandoned me and would recognize the generous friendly text I sent. We only exchange presents and Christmas cards each year through the post and have absolutely no contact other than that because my mother has been repeatedly out of control and dupes my dad into following her every manipulative idea – she is the expert after all.
I ended up feeling totally resentful that they had yet again ignored me, leaving me hanging, after that I had to place severe boundaries on them to stop them dropping in when they want, without asking regularly. I live 200 miles away from them and on my own and had clearly stated I did not want visitors at the minute thank you, and I would let them know when I did.
Even though I copied in others to the text – who responded within a day or two (so I know it was received) I got no reply from either parent. I felt manipulated after 6 weeks, and alone, and know it is my mothers method of control. It is possibly stemming this time from her resentment of me finally forcing an absolute boundary on her in the summer and threatening her with police if she didn’t stop what she was doing and actually meaning it since I had already spoken to them.
It is a tactic she has used before to manipulate/punish me into chasing them from what I now know is from triggering my fear they have yet again abandoned me. And yes I fell for it and sent another text.
And this time I got a reply from both of them! My mothers text was long, to control the conversation, where my dads text was very short with two lines.
My mother thinks she is a psychologist because she has a psychology degree, but she didn’t make the grade and couldn’t do the clinical psychologist degree or practice. I feel that she is really an amateur just like the rest of us but she makes others think and treat her like the expert with these ridiculously big theories of hers about people and why they are doing things that always make her look the overly kind martyr our relationship.
The thing is all her communication always makes me feel that we are lacking on a deep emotional level. It seems to be caring from the outside to strangers or people who don’t want to get involved and not read in context but if you experience it, it feels so hurtful, so nasty it takes my breath away sometimes. From someone considered to be so sensitive to others needs and feelings she can read them and speak for them to others?
Anyway I digress, this text started with congratulating ME for contacting them! After I contacted them originally and they ignored it completely 2 months ago!?
Next she gave an answer to my original question but made it so insignificant that it makes my original offer basically devoid, and it won’t put me in any special light at all.
The final point was classic, after having years of me being repeatedly abused by men sexually, physically, verbally, emotionally and becoming completely isolated from all friends and colleagues after my last seriously abusive relationship with a man who was diagnosed psychotic and completely betrayed me. I wanted to believe I could have a relationship with somebody/anybody and surely he must love me or be able to appreciate me? I was so physically ill from the stress of my last abusive partner that I actually developed an serious auto immune disease and nearly died. I didn’t see the symptoms and have had 9 operations in the last two years at the age of 44, it is blatantly clear to everyone I will not be having children of my own even though I would have loved to, really loved to, even if it was still physically possible and some man could see past the colostomy bag I now have as a result. My mother has taken it upon herself out of the blue this year to start announcing when every single woman is pregnant or has had a baby. The last point on her text was how someone who I don’t even know because she didn’t include the last name (I believe she wants me to fish for info) has had a baby. Something I can never do and on my own have come to a good place about it, until its flagged up by my mother who has also had her own children and knows it all….
It just makes me feel so floored by her every time and so crazy, even though I know we have a dreadful relationship where I literally don’t want to have anything to do with her and I know she is showing others including my dad, saying look how generous I am even though my daughter doesn’t want to have anything to do with me, and I am filling her in with all the family news and keeping her up to date, but with all the news from an entire family who basically abandoned me to her sick behavior my entire life.
I’ve tried having nothing to do with her, I find putting boundaries in place is absolutely impossible. I feel traumatized just trying to work out what boundary it is I need to put in place because I’m so unpracticed in it.
I’ve tried being what she wants me to be and its never enough. I’m upset, hurt and doing the bad things I learned from my mother/father in all my relationships. Trusting people I shouldn’t even though I’m looking hard and not trusting those I should. I learned to repress and not act on my instinct in order to stay safe from her anger and revengeful behavior once my dad and others weren’t around as a child. I take the wrong choices regularly due to the trust issues providing proof to my mother and the family, if they should ever need it, that I am completely the rotten apple and they are the long suffering martyrs all along.
And I keep hearing from my dad ‘Well you were perfectly capable.’
From my first memory, I have felt like I have been made of some sort of flypaper for trauma.
I am basically housebound and have a major fear of meeting, connecting, and attaching with other people in any way other than online. People hurt.
According to the last pro I saw, I have C-PTSD with conversion disorder. My trauma timeline (a literal timeline of traumatic incidents, memories, etc that we built in therapy) began at age 2. I have a history of long-term, consistent psychological/emotional abuses from multiple family members, gaslighting, covert pseudo-incestual victimization, and a mixed bag of years of homelessness/poverty as well as clusters of single-event traumas (natural disaster, single-incident sexual assaults from an early age on, spousal/partner abuse, bullying in school, hell – you name it). The longest consistent abusive relationship I had lasted from birth until I was 31.
I also spent long periods of my youth in and out of hospitals with various physical illnesses. (I don’t think that’s a coincidence, either.) Doctors and hospitals are some of my biggest triggers.
I have lots of triggers.
I began converting when I was 22, only I didn’t know that’s what it was at the time. Since then, I’ve had some symptoms come and go and others that have never left, like constant neuralgia. I was told it was like my body went all “TILT” and some of my systems got fried. I spent some time wheelchair-bound, unable to walk.
So besides the severe PTSD symptoms, I also have neuralgia, myasthenia gravis, and tremors.
My biggest triggers, besides the medical world at-large, are pretty basic and direct. Others are really complex:
any governmental/bureaucratic institution (like court, the Medicaid office, the police, the DMV),
phone calls or visitors when not scheduled ahead of time
sudden, loud noises
being touched without my permission
alpha-type individuals with large, forceful personalities
being late in any way
having to “explain myself” without reason
being judged
severe storms that could produce tornadoes
certain smells, words and phrases
anything unexpected
That last one is almost the hardest one of all to deal with. Sometimes I feel almost a kind of autism or something. Like my today has to be just like my yesterday – or at least as planned, and if not – if something throws a monkey wrench into my plan for today, I totally lose my shit. It can be something as simple as a bill that was higher than it should be or oversleeping. Not that sleep is something I get a lot of, but sometimes the insomnia flips itself inside out and all I do is sleep. Though at least with insomnia, I don’t oversleep, so I prefer it.
I heard this line once, from a favorite show of mine, “People with this thing (PTSD), they don’t believe in a just Universe.” Man, ain’t that the truth.
As I’m sure it is with everyone, my story is unique. There isn’t a single situation I have ever experienced that isn’t somehow affected by this damn illness. I don’t know how to let any of it go, either.
I also do not know how to relax. Other than right after orgasm. Which on the one hand, makes orgasm extra nice (when I can get one – yes, of course I have trouble there, too) but on the other hand, as soon as my body goes back to normal, I’m back to tension and worry. My muscles hurt all the time because I’m constantly tensed up.
I get bothered by things that have anything to do with control. Control being mine, that is. Of course, I can’t handle when I have no control, either.
I am on disability, and housebound as I said before, so I spend a lot of time with distraction. I have a couple of hobbies that bring me as much peace as possible, but sometimes even they don’t help.
I have bad days and better days. Once in a while, I have a good day. I never just kick back and enjoy a good day, though, ’cause I seem to be suspicious of it. It’s like I’m thinking, “What is going to come along and ruin this?” …because something usually does. It’s that no-relaxing thing.
It’s like if you’re on letter M, and letters A through L have been horrible? You can’t exactly just get cozy on M… and even thinking about what fun letter T would be would be all kinds of dangerous.
I guess that about covers it. Separating out the ingredients of the soup of this illness is really tough sometimes.
I don’t know if in future I’ll post specific events or not. Thanks for letting me put this all down like this, though.
While I am terrified of people, I am usually pretty lonely.
It’s like so much of it all has some vicious cycle to it, doesn’t it?
Three years ago, I was diagnosed with MS. It took about six months from the time I first saw my neurologist to get the actual diagnosis, but he and I were pretty sure we knew what it was from the beginning. I loved my neurologist.
When I say “my neurologist” I actually mean my second neurologist. My first neurologist was a ball-licking douchebag with the bedside manner of a used tampon.
For a couple years before I was diagnosed, I felt “off.” My memory wasn’t as sharp as it had been. I had occasional periods where I would lose my train of thought. I had periods of shaking and twitchiness and I often felt like I was in a fog. My primary care doctor sent me to Dr. Douchenstein, who spent all of five minutes with me at my initial appointment.
He examined my eyes, asked me how I felt, banged my knee with the hammer and said he thought I was fine…but if I really wanted to pursue this….*deep sigh*….he would go ahead and order an EEG.
When my EEG came back with “some small slowing in the left frontal lobe,” he said it was no big deal. He saw nothing remarkable and that there was no seizure activity indicated on the EEG.
In short; I was fine.
I saw him about 9 months later and he spent even less time examining me and indicated that no further tests were necessary. I could see the receptionist on the way out to give her my co-pay. Wham-bam-thank-you-man.
My primary care doctor believed something was wrong, though she didn’t know what. She sent me to see a new neurologist and this dude was the polar opposite of the first one. The initial appointment was over an hour long and he asked about everything.
Through his questioning we found out something very interesting.
As a child, I’d remembered taking an orange liquid-filled capsule. I’d stopped taking it when I was around 16 or 17 and I never knew what it was for. The truth is that when I got old enough to question what it was, I had taken it for so long that I didn’t think twice about it.
Dr. Raddude had me ask my mom what the pill was for and (finally) at age 40, I learned that I had petit mal seizures as a child. You would think that would be the kind of info I would have known, but nope. With this new information in hand and an extremely thorough initial evaluation, the doc went to work investigating.
Approximately 15 MRIs, a CT scat a PET scan, two EEGs and a spinal tap later, I had a diagnosis of multiple sclerosis. I was having small seizures still but honestly, at the time our focus was on diagnosing the MS. The diagnosis of the actual type of seizures has been in the last month, mainly because they’ve returned and have been getting worse.
MS affects everyone in different ways and for varying lengths of time. If you’re not sure what MS actually is, it’s a degenerative disease of the nervous system. It’s not fatal, but it does lower your quality of life. There are four types of MS and each is slightly different than the others, but there is one common thread: no two people will necessarily have the same symptoms.
My symptoms tend to be dizziness, loss of balance and coordination, dropping things, stumbling over my words or slurring words, losing my train of thought, straight up forgetting things (things that I should absolutely know) and (this may sound funny, but is NOT a joke) I had one more symptom in my head to tell you, but I cannot remember what it is. Whatever it is, it’s kind of new to me and I was going to tell my doctor about it, but as I said, I forgot to write it down.
When I was first diagnosed, I was in the midst of my first big MS attack. It lasted about a year, and in that time I had to use a cane, could not walk more than a block or two without getting completely exhausted, had to write everything down in order to remember it, fell I don’t know how many times, including a half dozen times in the shower and went through a two-month period where I needed to sleep 16-18 hours a day.
This wasn’t stay-in-bed-like-I-have-depression, this was sleeping because my body needed the rest. My neurologist said it’s not uncommon for some MS patients to go through that and it completely sucked for me.
Throughout all of this, I had full custody of my daughter. Luckily, I had nearby family who could help me out. For a while, I was having a hard time with doing simple things like fixing dinner. There were nights when I would try to cut veggies and my hands were shaking so badly that I was afraid I would cut a finger off. Other nights, I repeatedly dropped whatever I was carrying–plates, food, knives, you name it.
I couldn’t drive for almost a year because of the dizziness. Luckily I got state disability for six months, but was denied SSI. Why? I really have no clue. The crack medical team that evaluated patients for Social Security was holed up in a shitty storefront office with 1970′s equipment and they said I didn’t need it and that was that.
Assholes.
The kicker was the woman I was dating at the time. She is a RN at a very well-respected hospital and one night she told me this, “If you can’t work and can’t do the normal things you should, what good are you?” And with that, she dumped me. Swell, huh?
For two years, I did pretty well. The symptoms were minimal and except for a couple of small episodes I remained symptom-free. Until about two months ago. Things haven’t gotten as bad as it was the first time. Yet. Maybe it never will. That’s the thing with MS–you just never know.
Since the first attack I’ve moved far away from my family. I have a new neurologist that I absolutely love. She’s as thorough as the first one and is the one who actually diagnosed my seizures as Juvenile Myoclonic Epilepsy or JME.
Thanks to the seizures, though, she is pulling my drivers license which means I need to look for a new job.
My current job requires a license. Plus, I deal with people on a daily basis and it’s tough when I keep stumbling over my words. I’ve been mocked by some co-workers on a regular basis as well. A couple of days ago, I was standing in front of my boss’ desk for about five minutes and we were talking. In that short time I dropped my pen three times. He never said a word, but the last couple of days I’ve had co workers pass me in the hall and drop whatever they had in their hand. They will generally bend down to pick it up and say something like, “clumsy me.” It’s childish and makes me feel both pissed and like less of a person–though I know I’m not.
Things are starting to suck ass again, but it’s not the end of the world. I have a couple of friends here that I can count on and I have a wealth of them back home and ones that I’ve made through my writing. I consider Aunt Becky (ed note: I love you, yo) a close personal friend and I would help her in a second if she needed it.
The bottom line is this: I have MS and JME and they will both (to a degree) diminish my quality of life and will make things more difficult for me, but neither disease is who I am. I will find a way to get by. I’ve taken this and put my own touch on it. I occasionally have to use a cane, but I found one that has flames painted up it.
It looks way awesome and it’s my way of looking at the MS and the JME and saying, “blow me.”
