sah Why do I feel like a fraud?

[Matt75]

 

This is my first proper post. I have read comments on this amazing site for a couple of months now. My Partner, Donna set me up and used it for help and advise to best support me once I was out of hospital. 

 

I suffered a cat one bleed on 7th September 2019 whilst out on a park run. I lost the feeling in my right leg and arm (from what I can recall). I was conscious throughout. After a scan I was found to have two aneurysm’s one of which had burst. It’s worth noting that I am one of three Brothers. My younger brother suffered a SAH 15 years ago. My older brother suffered a stroke this Christmas Eve. Subsequent scans have revealed he too has an aneurysm and is awaiting a date for his coiling. 

 

My coils were fitted on the following Monday and I was discharged 18th September. Throughout my time in ICU and ever since, I have always struggled to accept what has happened to me. I felt like a fraud, like I was wasting the time of the Drs and nurses who helped me. When I read the posts on this forum it seems to enforce my feelings. I only had a cat one bleed, only had 2 coils fitted, only spent 12 days in hospital. I often think I should reply to some of the posts with my experience but then tell myself that I haven’t had the same experience, so how can I?

 

Prior to this event in my life I was running a lot, 5 half marathons and the Edinburgh marathon. So I was fit and very active. Now 6 month post SAH I find myself struggling to walk more than a mile. That said I know I am very fortunate to be able to walk that distance. 

 

I started my re-integration to work 8 weeks after the SAH, an hour per day for a couple of weeks. I am currently working 5 hours per day. It has been a major benefit having a very supportive employer. Again I find myself struggling with what I am typing. I have it easy compared to a lot of others!  I struggle with my employer telling me to take it easy and that I should slow down. I feel like I am taking advantage of my situation. 

 

My scars are not visible to me so I can’t see why I should be treated any different. The only time I realise I can’t do what I want is when I hit the wall. (Running terminology). I recently had 2 days off work after increasing my hours from 4 to 5 per day. Too many meetings and too many issues to deal with at once wiped me out. 

 

So why am I writing this post?  Not sure really, other than to tell my story in hope that it will help me come to terms with what has / is happening to me? There may also be others that feel the same as I do, frightened to speak out?

 

 

 

 

[Macca]

Hi Matt - and welcome to BTG.  Please stop beating yourself up about this.  You are most definitely not a fraud.  Your body has been through a major trauma and you need time  to recover.  It is a slow process and your body will be telling you that over and over again for a long time to come.  Patience is a virtue!

 

It is also a cause for concern that you think you can't see any scars and therefore that you should be alright - but the injury is internal and you CAN'T see it!  To use an analogy, it is like looking a a car with not a scratch on it, without realising there is no engine in it and it won't go.  At the moment you are that car!!  So it doesn't work as you describe Matt - real life isn't like that!

 

You will over time need to make adjustments and one of the biggest challenges for you now is to realise that something big has happened to you and that you will need to adjust. We all normally do this with age and maturity but in your case, as well as ours, you are now having to think about it due to a sudden event - your SAH.

 

Once you get your head around that, it becomes easier to deal with.  One thing you will perhaps need to do is re-evaluate what you do and see if you can delegate some things to others, relinquish some duties, go on less hours,  train others instead of doing the job yourself and so on, ie pass on your knowledge to others etc etc.

 

It needs a bit of thought and it sounds like you have a great employer - keep talking to them, especially about your treatment and limitations. Remember they can't see your illness so you need to keep telling them.

 

Fatigue will be a bug bear for some time to come, and you will maybe have short term memory problems so start keeping a diary, make notes and keep referring back to them. Many of us experience these things and keep diaries, but although there are many things very similar, everyone's journey to recovery is different.

 

In terms of your medical problems keep in touch with your medical team because we can't give medical advice - there's good reason for that - we're not doctors and we're not qualified  - so go to the people that are!  What we can do though, is recount our own experiences and provide you with support and advice on other matters that you don't get in any doctor's surgery.

 

Feel free to come on here and share your experiences and someone will usually be able to answer.  Have a look round the site by clicking on the main subject titles and lots of different threads will come up.

 

Good luck Matt!

 

 

 

[Swishy]

Hi Matt,

We are all here as we have a common thread running through our lives SAH....each of our stories are different...but please please do not feel like a fraud, not here...we have you....I am so happy you reached out to us...I hope you see as you read our stories that each of us is battling our own fight...but here on BTG we come to vent, cry, laugh and share as we celebrate that we are survivors...

Welcome to BTG...

Jean

[Skippy]

Hi Matt

 

I completely understand what you're saying.  I felt EXACTLY the same when I joined BTG. 

 

I had two aneurysms - 1 burst, 1 not - overall not a serious bleed.  I have 9 coils split between both.  I has my SAH early hours of the Friday morning, operated on Saturday and out of hospital on the Tuesday.  I was back at work three weeks later (own business with hubby could sleep when I needed).  I had no physical limitations other than tiredness.  I now work 37 hours a week in a very busy school office and have worked full time since a year after my SAH.

 

However, you are no more a fraud than I or anyone else here.  You had a bleed - the hows, wheres and whys do not matter - it happened and its very hard to come to terms with.  I was angry, frustrated and very scared for the first couple of years.  The first anni-versary was the scariest - the irrational part of my brain told me that it was bound to happen again on that very same day.  I went to hell and back that first year - my emotions were all over the place, I went from the heights of happiness to the depths of depression. I truly thought I was going crazy - it was the scariest time of my life.  I lost who I was, what I did and how I felt - I lost me!  

 

The best advice is to let time heal, slowly accept your new limitations - the "new" you.  I know that I actually prefer the "new" me - I don't sweat the small stuff anymore, I feel I'm more compassionate (maybe not more patient though!). 

 

It can be a long road to recovery (and I always say this) but you can take as many pit stops along the way as you like.  You'll always find one of us here at each pit stop you make. Feel free to rant, rave, laugh, cry, shout and scream - there will be someone here who knows how you feel at each stop along your journey.

 

Stay positive, look after you first and foremost and rest when your body tells you to!

 

[weedrea]

Matt I'm quite like you as well...two aneurysm, one of which bled. Though if we're taking count, I only needed 1 coil as my aneurysm was so small! I think they needed to get the microscope out to see it. As others have said, take it easy on yourself and remember that you have had brain surgery, and that is definitely not nothing.

 

I took a little longer to get back to work than you and by then had so many holidays that I took every Wednesday off for about 3 or 4 months. I still take a couple of Fridays/half days off when things get too much. Evening snoozes, even for 30 mins, are a must if you're feeling like meeting are too much. I am also very lucky with my employer in that I work at home full time but I definitely find it very tiring still (4.5 years after my bleed) when I have to go into the office for all-day meetings.

 

I also think after a traumatic event like this, you can get 'survivors guilt' especially when you feel that others are suffering much worse. But never forget, you're a brain surgery survivor.

[Daffodil]

Matt, you use the word ‘only’ a lot to describe your experience of surviving this life threatening event but have no doubt about it that what you have lived through is no small thing, and no yours is certainly not trivial, don’t  compare yourself to others, there’s no prize for competitive SAHing!

 

We all share in common the fact our brains bled, yes always will be varying degrees of scale and complexity of course  but let’s face it each of our brains is utterly unique , so we each carry a unique experience of how our bleeds have impacted us and sharing that insight can be so helpful and reassuring  as we learn and navigate and adjust. So how you adapt to your bleed and it’s effect upon you, your life and what you can offer others as you learn is what will aways be beneficial.

 

Facts I’ve learnt along the way. Only 1 in 3 survive a SAH. Of that 2/3 may be left with a permanent disability or long term effects effect but we each acquire a brain injury the day our brains bled, so I’m so glad you decided to post and there is no ‘only’ about your event. Jean puts it well when she says we ‘celebrate’ our survival,  equally we can all just offer support when the days are a real struggle as we try and find that new normal . We know that feeling. 

 

Amazing you seem to have a strong hereditary link in your family. I am glad you are recovering ok but it’s a strange landscape fter the bleed. The surface of the brain doesn’t like much getting blood over it so it can really mess about with balance, thought, stamina and cognitive thinking. Placing Lots of breaks in your day will Help now you’re back at work. Do something, then pause and take a breath and be still and quiet. Then resume. Build up in slow incremental chunks and if you add on extra an day hit a wall then like training drop back and then go up in slower increments.  (I’ve never run but have a partner who does!! )

 

glad to have you with us. Daff 

[Matt75]

Thank you all for your replies. Each reassuring and comforting. Again I’m not sure what I am looking for after this post ? It was more an opportunity to vent and share my frustrations. I hope no one thinks I have trivialised having a SAH?  That was not my intention, I am struggling to accept it for myself, but feel that posting this may be a step towards helping.

 

Again thank you so much for taking the time to read this and thank you for all those who sent a reply 

 

Regards

 

Matt

 

 

[Super Mario]

Matt, you have not in any way trivialised having a SAH.

 

Share and vent any frustrations you may have on here and you will get plenty of support from our members.

[Skippy]

Matt, no one here thinks for one minute that you trivialising SAH.  When I joined all I was looking for is affirmation that the emotions I had were normal / usual after something like this happening.  The very fact that you are struggling means that this is not a trivial matter for you at all.

 

Every one of us here came here for help and understanding, no matter what aftermath we were and are going through.  There is a wealth of experience and understanding on here and that's what you may need to get you through the next few months.

[Louise]

Hi Matt, and welcome so glad your able to post now....

 

I think what you said is the same for a lot of us in one way or another, and there's nothing (I don't think) trivial about an SAH its not a broken bone that a cast can help repair....

 

you definitely will find a good support network on this site...

 

take care.

[Chris G]

Hi and welcome.  I had the same experience when I first joined BTG.  I had a NASAH while running and have not been through what many on here have.  I am also mostly back to my old self, while I know many here have daily struggles.

 

I learned quickly that I am accepted.  As mentioned above, we all experienced something tramatic and we all need support.  I love this forum and the people here.  Please feel completely welcome.

 

Chris

[Suzanne]

Thankyou Matt,  I've just joined the group and what you said is exactly how I'm feeling. I had a SAH coiled in December.  I look fine although headaches are often and I'm so tired and feel generally odd. Not back at work yet. But thank you. I'm just looking for support and stuff I think . 

[Marobinson71]

I’ve literally just joined having had a SaH nearly three weeks ago and having been home for a few days.

 

I’m early in my journey, but the comments on here help immeasurably.

 

Talk about feeling like a fraud, I was in ICU during peak Covid admissions!

[Doonhamer]

Matt, it can take quite a time. I'm amazed that after a year I'm still getting better.  I still have panic days when I feel like a fraud, wondering if there's nothing or if I'm useless. Friends can say it's amazing I'm still here.

 

Suzanne & Marobinson71, good to meet both of you.  

 

That is some story about being in ICU with COVID!  You can't be a fraud or you wouldn't have been in there though - very lucky to get out.

[Shell`ey]

Thank you for your post, Matt. I fully understand what you're saying. It's been just over two years since my hemorrhage and, all in all, my recovery has been good-to the point I thought I could function in life same as before, other than being a little more tired and trouble finding my words at times..which I downplayed or joked about.

 

Recently, though, issues have arisen that have caused me to take a more serious look at the effects of the hemorrhage and how they may impact my function.

 

It's difficult, isn't it? When you know you're one of the "lucky ones", when others see that you're "fine".

 

I just joined this group today-right now-in hopes to find possible connections between my current symptoms and prior bleed when your post jumped out at me and got me thinking.....is this how I've been feeling too?

 

I've been working full-time 1 1/2 years (new job but Boss aware of my prior injury and he is great).

 

I'm a rehab therapist treating independent and assisted living patients, as well as, skilled nursing patients. It's a demanding, high paced job in general, but I was managing...until the pandemic. It took me months to come to terms with the fact I can't handle it. I kept thinking-'but I'm fine, if my co-workers can do it, why can't I?'

 

How can I blame it on my hemorrhage when I've been working all this time?' 'is it just an excuse to get out of a horribly stressful situation?-after all, others are experiencing some of the same symptoms I am'.....and so on.

 

Then when I go to the Doc's, I hear statements like "well, I saw you out running the other day" (implying I must be ok)--which, btw, I wasn't running-I was struggling to jog-, and another Doc "oh, so it was just a small bleed, ok". What the hell?-it sure didn't feel small!

 

So I understand feeling like a fraud, but we aren't! I have to take care of myself-for me, my children and family. Two weeks ago I stopped working and filed for FMLA. Even though I know I'm not a fraud, I still feel guilty working out-afraid someone might see me and wonder why I can work out but not work-how I can look in great shape but be filing for temporary disability.

 

But they don't understand it's 25% of what I'd normally do (body builder), and 80% more difficult.

 

I struggle with this, and every day have to tell myself it's my life and my health, and give myself grace. Only you know you. Just because the effects from the hemorrhage aren't there ALL the time, doesn't mean they don't exist.

 

Again, thank you so much for your post. It prompted me telling myself a lot of what I need to come to terms with. Have a blessed day.

[Macca]

Hi Shell'ey,

 

I just read your post with interest.

 

I have spotted a couple of potential issues and I hope by pointing them out that I may help you.  It is interesting that you, yourself are a rehab therapist.  So here goes:

 

1) A brain injury is invisible, so only you can understand how it has changed you on the inside. So you have to keep communicating to others about how it has affected you. It doesn't all have to be negative - it can be "It did this to me but this is how I coped with it....."

 

2) Are you helping everyone else without looking at yourself - is that acting as a kind of trying subconsciously to convince yourself that you are ok, when really you aren't? Does the current pandemic take you back to your own struggles, and the subliminal messages it presents you with, makes it unbearable?  Maybe it is time to confront those issues and take some counselling yourself? It is a big person who admits to that, especially when you are 'in the profession.' Is that an option for you?  Worth considering in my book!

 

3) Is your fitness regime now part of your rehab? Do you need to explain that what you do is only a fraction of what you did before?

 

4) Have you checked the conditions for you to receive he benefit you have applied for?  Does your fitness regime fit in with it? Do you think they would refuse you the benefit if they knew you were doing it? Could you get a note from your doctors to explain it so you still comply with the benefit rules?

 

5) Brain injuries are notoriously slow to recover from. The passage of time does not always fit in with other peoples ideas of how long it should take to recover. It actually takes as long as it takes and no amount of cajoling by others will make it be any faster.

 

6) Don't beat yourself up about it. Anyone who has had a brain injury is a hero in getting on with life, in whatever capacity they are able to.  It sounds like you are doing remarkably well.  When you watch a magician on TV, you know its a trick, but you don't know how they did it.  A brain injury is no trick but they still don't know how you do what you do!  So tell them. And then tell them again.

 

You are a walking miracle, a testament to the modern skills of doctors and nurses, and you are a testament ,too, to your own resilience and power to adapt.

 

Those are my thoughts about what you have just said. I hope I am reading you right, I do not mean to cause any offence, just to try and help you. Sometimes we can't see the wood for the trees. I have been guilty of that myself, especially in the early days after my 'event.'

 

I hope this has been of use to you.

 

Best wishes,

 

Macca

[Shell`ey]

Macca, thank you for taking the time and interest to understand and respond to my post. You have been very helpful.

 

Points one, two, five, and six are right in line with what I was contemplating further on throughout my day yesterday.

 

I have often shared my own experience whenever applicable when working with my patients, however, it seems it's usually been in a very past-tense way.

 

Point two really speaks to me. I believe the pandemic, in my work setting, has pushed the workload to a level that brings about my limitations, and have manifested into other physical symptoms as my brain is unable to process fast enough for what is currently required.

 

Points three and four are super helpful. I hadn't thought about addressing this specifically with the Dr. and FMLA/disability company. As my physical symptoms have decreased significantly over the past two weeks off work, and with what I've come to realize through this forum, I think I'll need to take a different approach regarding leave.

 

It will be tricky explaining how an injury prior to this job is now currently limiting my ability to do my job in these conditions, and I don't know what the parameters are for claim approval, but it is what it is.

 

Again, I so appreciate your advice, and it has given me a lot to work with and consider.

 

Thank you-Shell`ey 

[Macca]

Glad I could help, thank you! It's what we are here for.

 

Sit down and plan how you will explain your injury. Rehearse it if necessary.

 

English is a great language for finding alternative ways of saying things.  Good luck.

 

Macca

[Josie Rosie]

Hi Matt,

 

Reading this bought back memories as I too was on Park Run 🏃🏼‍♀️ one Saturday morning.

 

I had a blasting head after running for 15 min and for some mad reason I continued to just walk around holding my very stiff neck .

 

Look after yourself you are lucky to be here as we all are . Sounds like you’re doing great and remember you wouldn’t tell anyone else they’re a fraud so don’t say it to yourself.

 

Take Care Matt