Tower Crumbling. . .

[EvenStrongerNow]

As you know, part of my trauma is getting an earth shattering medical diagnosis. There are things that I need to follow up on like finding doctors, having medical records transferred, and continuing testing.

In February, I just finally went to a neuropsych to get some help with medication for PTSD. I was supposed to start CBT, but I am feeling extremely overwhelmed at the moment. It has been almost 8 months since I've had a job. I've been making progress here at home on most days, but with relapse in medical symptoms, I am having a hard time.

I feel so overwhelmed today by what I need to get done. I am trying to break things up into small parts, but I am finding the idea of time getting to me especially since I've been in school three days a week.

I feel very stressed about being behind on one of my classes and having a scheduled exam coming up next Saturday.

Multiple sclerosis and PTSD both present with cognitive symptoms. I have this feeling over the past few days that something is going to come tumbling down. Yesterday, the weather was really hot and it got to me. I experienced heavy fatigue, balance issues and mental confusion. I had stop in the middle of traffic and ask my husband to take over driving. It was awful.

I got through it but the anxiety I feel about more hot days coming is too much to bare. I over did it yesterday. The grocery store, running a couple of errands, putting the groceries away, doing the dishes and cooking a fab meal. I just kept going because I'm so sick of not being able to do much anymore.

I feel afraid that I won't be able to juggle all of this. I need a plan. I need to do this. I don't want to lose all that I've built up over the last month or so. I don't know what the right steps are to take and in which order.

The other day, I went to the gynecologist for a checkup and to find out why I haven't had a menstrual cycle in 8 months. She referred me to a reproductive endocrinologist. She wants me to have an ultra sound and check to make sure I am still fertile, have blood work done, etc.

I freaked out. The good news is that I stopped myself from dissociating on the way home. Instead of going to a bar to stuff my feelings with alcohol (which by the way, I never drink really because it makes me sick, but I really wanted to), I went to Subway and ate lunch. I don't know how I am supposed to see doctors with PTSD and medical trauma.

 

[Deleted member 1860]

Are you registered with disability services at your school? I am, and although I don't always need the accommodations, I'm glad the safety net is there.

 

[EvenStrongerNow]

No, I am not. I don't know anything about how that works. The thought crossed my mind before the semester started, but at the time, I wasn't doing well and already so overwhelmed. I did email the disability center at the school twice and didn't receive a reply. The thought of having to go in there, fill out paperwork, get papers signed by my doctor, etc. . .I decided that I didn't need accommodating. I guess I was wrong. I avoided it. I guess I really do need it?

 

[Deleted member 1860]

It does take a bit of work, but the good thing is that you only have to do the work once and then you're good to go. What I mean is that you'll have to meet with an advisor, discuss available accommodations, and then meet with your doctor so that he can write a letter (or fill out your schools accommodation form) verifying that you have areas that you need help with. Then, every semester you meet with your advisor to get your accommodation plans and that's it. It takes a bit of work, but I think the safety net is well worth having as if your symptoms spike, your instructors will be more accommodating because you've already told them what you're struggling with.

My accommodations allow for time and a half on exams because my mind often blanks completely and it's good to have a little extra time so that I don't freak out when this happens. I'm also allowed to take my exams in the testing center where it's quiet and I can focus better. I also like that I'm given a timeframe in which to take the exam, such as "within a few days" and notan exact time like 2pm on Thursday. This part isn't in my plan, but since my testing center is walk-in and not by appointment, this really helps so I can go in when I am ready and not when I am told. My instructors know that if I get stressed I may need to step outside of the class for a few minutes. I also have the ability to use my laptop or tablet in class, but I never do.

Your accommodations may be completely different depending on exactly what you're struggling with. And you may never need to use any of your accommodations at all. But, I think it's good to set up safety nets because the truth is that we have struggles that others don't have to deal with and it's good to know if symptoms spike, there is a bit of leeway in classes.

I hope you can meet with a disability advisor so they can steer you in the right direction with all of this. I know if I didn't have their support, I'd be freaking out a bit more as there's a lot of comfort in knowing that the help is there when I need it. Unfortunately, we need to request the help in advance, but it's good to have it when we may need it.

 

[EvenStrongerNow]

Thanks Solara, so much, for sharing that with me. I will go tomorrow and get the ball rolling.

Do you have any suggestions how to get through the medical trauma? I really need to see doctors.

The medication that I am on right now for PTSD has been really good because I am not crashing and burning so much. I don't feel as fragmented, but I'm finding it extremely difficult to take the steps to get records transferred so I can go to the MS center in my area to continue the process. I am also deathly afraid of getting a lumbar puncture. I'm deathly afraid of the entire process.

 

[Deleted member 1860]

I'm all for doing things for ourselves, but I do know there are times when we need help from someone to do things that may come easy for others. I'm reflecting on my own situation which wasn't medical in nature, but I would completely shut down when having to deal with any facet of it. I was fortunate to have family pushing me through, guiding me, helping me to organize things, etc.

Do you have the option of talking to your husband and asking him for help and guidance in this process? Maybe you could sit down with him and make a list of your old doctors. Then make a list of the steps you need to take to get the records. And then figure out how you'll go about getting those records. Maybe contact one doctor at a time to request records, or maybe it would be easier to call each and find out how to request the records, and then one day you'll fill out the paperwork, a few days later you can send the paperwork in, etc. just a few thoughts as there is more than one way to skin a cat and I don't know what would be easiest for you.

I think that breaking down the process into easier to accomplish steps will help.

 

[pamcoco]

I completely understand your trauma from illness. I have often wondered who and where I would be if I had faced the assaults well, instead of so very ill. I do know that the illness and my mental functioning are incredibly intertwined. I can only imagine what you must be going through. I am positive my ptsd would look very different minus autoimmune disease.

I apologize for my coming and going. The illness conversation, or more specifically the DOCTOR conversation cause me to check out like no other issue. I simply go away. I mentioned I would like to chat and learn more about your health challenges. I do mean it. Might you be interested in a phone conversation sometime?

I understand either way.

You are facing more than most ever will and overwhelm seems perfectly natural. Anyone would be, at the very least, overwhelmed as well.

I find you are incredibly aware, communicative and informed. It seems what you face is a constant process and at least from my point of view you are, like you say, you are involved in the journey.

 

[EvenStrongerNow]

Thanks ladies for your support and thank you Pamcoco for the compliments. I don't know if I would be OK with a phone conversation. I will think about that and get back to you.

I am relaxing today and feeling a bit better. I'm going to hop back online tomorrow and re-read your posts to come up with a plan.

Solara, I often forget about breaking stressful things up into small parts. Thanks for the reminder.

 

[EvenStrongerNow]

I was thinking a lot about a telephone conversation. I know you posted on my profile to give it no thought, but I have anyway.

I seem to have a habit of putting myself out there and then drawing back inward when other women respond with interest in getting to know me. This wasn't always the case, but it is now. Connection is hard for me in the sense of, "OK. We connected. Now what?" I feel anxiety and I cannot stand the fact that I'm giving off mixed messages--especially since I offered to go to the doctors with you in another thread.

I wonder if I'm afraid to allow others to support me. I do not know where the anxiety is coming from. And if I've hurt your feelings, I am sorry :(

 

[pamcoco]

Thanks that is kind and self reflective. People are repelled by me and I am not sure I feel hurt so much as saddened by my inability to be who I used to be, a social powerhouse an friend to so many. The extreme comparison is earth shattering as I approach people but am ultimately too much. I cannot blame them, I am too much for myself. I would choose anyone over me if I could. Perhaps the essence of ptsd.

But since I can't chose someone else I am stumped by the life and solitude before me. I am either ON or OFF in the presence of others. Neither is the person I know and I am as uncomfortable as they are with my presentation and new self.

I want to validate, EvenStrongerNow, that I would absolutely trigger your discomfort. I find for most it is a fear of being consumed by my tornado. But no one is my lifeline and honestly no one ever really goes to the doctor appt.

But slowly I find grace and purity in rough social skills. There is something admiral in being beyond any facade, even the facade that kept me palatable.

 

[goingonhope]

Hi,

Follow-up and through can be quite challenging as you well know. The decisions to do so is like regularly having to pull open again and again a heavy large door of complexity. Both Ptsd and Multiple Sclerosis can be or become extremely complex.

A number of things in ourselves and our lives, can or do make all this complexity even harder to manage.

As someone with both ptsd and multiple sclerosis, I'm still presently seeking and wishing that in this life again, I'll be strong and live enthusiastically. Achieving this goal, though presently out of reach for me, is still worthy of putting forth the effort, experiencing and later achieving..

From what you've said EvenStrongerNow, perhaps, if you're not already:

.....Certainly take daily Vitamin D in addition to your multi-vitamin.

.....Own, keep clean and well-maintain air-conditioning in both your home and car.

.....Prioritize and keep clear, simple records of your MS symptoms (and symptoms you're unsure of), ....add Ptsd symptoms if practical and if these will be helpful.

.....Perhaps keep visible index cards or such stating something to the affect of how you cannot afford to overdo things and other helpful reminders and affirmations.

Also, in my opinion nearly everyone needs to simplify their lives regularly, to ask and accept help when available and to regularly accomplish and/or eliminate, what makes sense in order for you to improve and maintain your health.

I've been having an extremely tough day thinking, and responding is quite tough for me.

(started this response much earlier)

I know it's not much, but it's something and I will post it, even if to let you know you're being thought of well and you will experience well and get through much more than you may imagine you can.

 

[EvenStrongerNow]

(((@pamcoco))), I would still . . . go with you. I am not repelled by you. And I know intimately the struggle: me now vs me then.