Struggling

[Nikki A]

It’s been one of those weeks where the headaches have been particularly bad and left me exhausted. I sometimes think I went back to work too soon, I’m now 5 months post bleed.

 

Been back to work coming up for 3 months. I work shifts so am missing the routine I had when I was off, thought I was having another bleed today as the intense pain spread up from the back of my head.

 

It’s left me feeling very irritable and quite honestly just wanting to barricade myself in from everyone. Feeling guilty about this, my kids wanting to tell me about their day and I’m just not wanting to communicate.

 

I keep telling myself, I’m not dead, I’m lucky and others have it much worse.

 

I had my follow up with Neurosurgery which was horrible. The doctor was so condescending, I left feeling very downhearted.

 

I see a neurologist in 2 weeks, hopefully that will be better and maybe they can ease the headaches. 

Sorry to moan, I know we are all suffering, but it feels better to offload to people who know what this is like. 

[Macca]

Hi Nikki,

 

Five months post bleed is next to nothing in recovery time from a SAH.  Your body has taken a big hit and it needs plenty of time to recover. Don't beat yourself up about it.

 

If they are old enough tell your kids what's wrong when they are a little quieter.  They can't see your injury so you need to tell them what it is.

 

They may feel hurt or rejection when they can't tell you things at certain times, so tell them it isn't because you don't love them or aren't interested, it's just you aren't up to it. May be they can tell you later, or the next day.

 

But they need to know so they can understand.

 

That will also take some of the worry away from you, as well as them.  Communication is a two way thing remember!

 

Tell the neurologist how you feel, write down any questions you have and ask them rather than come away wondering.  They are there to do their best for you and you have an expectation and a right to expect that from them.  If they are not then tell them - be assertive without being angry or emotional if you can, but they need to know if they are letting you down in some way.

 

Your perception is important as that is the image you take away with you and tell others about, so it should be important to them.

 

Keep your chin up.  You are a survivor. You won the lottery ticket of life, but you need to recover at your own pace, not that of others who want you to be back to normal, whatever that is, as soon as possible.  Keep telling them also that your injury is internal, and however normal you look on the outside, it is very different on the inside!

 

Good luck!

 

Macca

[ClareM]

As Macca says 5 months is very early days and maybe you went back to work too soon. Shifts as well can be very punishing so take it easy and maybe step back a bit. 

 

Unfortunately the more pressure you put on yourself the worse it will be. Stress is not our friend post bleed so try to reduce it as much as possible.

 

Some good ideas from Macca try and use some of them especially regarding your family. 

 

Hope things get better soon. 

 

Clare xx

[PJ-ND]

I had very poor treatment from a lot of specialists. I was basically dismissed from the neurosurgeon because there was nothing to surgically fix, and also from the neurologist because I didn’t have any identified deficits in the ICU, and a neuro-psychologist because he basically didn’t know what to do with me.

 

I have found I receive better help from the lowly physician's assistants and family nurse practitioners for a general practice doctor I see than I did from the highly educated, specialized doctors. Don't be disappointed if you get little help from the neurologist. It has been very difficult to get any medical professional to believe I could have memory issues, the headaches, fatigue, low tolerance for chaos or stress, from my SAH or that the symptom are real, and that they actually might interfere with my ability to work full-time at a highly stressful job.

 

I swear this group could quite possibly have saved my life. The depression and frustration I had in the early days when most doctors treated me like I was exaggerating the symptoms almost drove me over the edge. I stumbled on to this site, and although I don't post much, I read a lot.

 

To know I am not alone, and that I am not experiencing anything different than most people with a similar medical conditions to what I had? It has helped me stand up for myself, not be ashamed of the ongoing issues I have, and I don't ever let anyone tell me that I am not having the problems I am having as a result of my SAH!

 

I hope you get help from your visit to a neurologist, but if you don't, keep on trying to find a doctor that will listen.  Don't give up advocating for yourself and your care! I live where few doctors have had the opportunity to take care of a SAH survivor. I believe many are just not all that educated about what the true outcomes are.

 

I am almost a year and a half out from mine, and I finally do have good days. However, I have a lot of not as good days. When I push too hard or work is stressful, or I don't get enough sleep, I generally pay a big price by not feeling well for days on end. It has been very difficult for me to accept that I might not ever be the person I was before. To see that many people here go through the same things I am dealing with makes me feel like it is OK to say “I need to take care of myself, even if that doesn’t fit into your agenda for me”.

 

The reminders from people on this site that I could be so much worse off, or that I could have died, well, they help me look to the positives in life. As much as I want to get hung up on all the things I can't do or that I can't just push through a day because I am(was) a strong person - people here help me remember that I have so many good things happening in my life too.

 

I have a husband and my adult children that help me so much. When I get down on myself, they are quick to remind me how happy they are that I am still here with them. They remind me it is OK that I am not super woman anymore. In spite of how good they are to me, I still let my frustrations boil over and get short and cross with them at times. But they hang in there with me and cheer me on to embrace the new me and be OK with it.

 

I don't know yet if this is all the better I get, or if my brain is possibly still healing some. But no matter what, I take a stand for myself, I speak out about my symptoms each and every time I see a doctor. Any kind of doctor - so they can learn about a survivor of a SAH like me.

 

I may look perfectly normal, the same as before, but I have real, not imagined, brain issues and physical limitations that are not gone yet. Maybe the next survivor to walk into their offices will benefit because that doctor has heard from me that not all is well on the inside just because I look fine on the outside!

 

It has been life changing to know that I am not alone. There are a lot of survivors here, and while everybody has a different course through the aftermath, many have the same issues I do.

 

It does get better. Even though I might not ever get back to who I was before, I do see  big improvement from those first difficult months after being discharged. Listen to them. Take all the time you can get to rest and heal. I wish I had been given the opportunity to do the same.

 

 

 

 

[Chris G]

I send you best wishes for a continued recovery.  It takes time and patience.  Please hang in there.  You are a survivor!

 

Chris

[frmertd]

pj-nd, you hit it right on the head. Specialists dismissed me, family practice didnt wanna waste time with me. The lowly physician assistant told me all about "cognitive rest" and was the only one who cared!!

[Macca]

Hi PJ-ND,

 

Thanks for posting again and giving your insight.

 

It's clear that you are learning to 'manage' the way you tackle things these days.

 

On good days it is tempting to cram as much in as you can, but as you (and me) have learned, there is a price to pay for that, and that is the recovery time and the way you feel, sometimes for days afterwards.  I think the key is to do what you can, but underplay it rather than overplay it, so that you can repeat it, rather than suffer for it.

 

The key is to build up what you can do slowly, even though it is tempting to cram in as much as you can the first time you feel able.  You are still recovering - listen to your body, recognise it, and get used to what it is telling you and take heed of it.

 

You are right about the invisibility of your injury - so make sure you keep telling people about it. If you look at two cars parked on the road - which is the one that isn't a runner?  You can't tell until you try to start the engines!

 

I'm glad you recognise the improvement in yourself - that's important - and you will continue to improve, albeit some of those improvements will be subtle, but they will be there!

 

Good luck and best wishes PJ - yours is an inspirational post and an example that improvements take time and patience.

 

Thank you,

 

Macca

 

[frmertd]

I gotta tell you, too. I really admire you mothers that have this. Having multiple children talking at the same time, vying for my attention, would be SO HARD on your brain. And yet you do it every day. My hat is really off to you moms out there. As a man, i could always dissappear to the bookstore or somewhere quiet. But you can never escape. I really admire all you moms out there. You are amazing.