Part 25 – Navigating through a tangled maze to find answers…
After my first visit to the brain injury unit I was left feeling hopeless at the possibility of returning to work, unfortunately the staff didn’t have the expertise to provide me with the support I needed in regards to returning to work, especially in relation to my circumstances of being employed on a fixed-term basis at the time.
The team I was working with advised me to terminate my contract of employment with it being temporary and especially as there were only 3 months left of my contract. After receiving this advice you can only imagine how down I felt at the time and how it completely shattered my confidence in my ability to be able to work in the foreseeable future.
It left me feeling incredibly confused and unsure of what to do next.
I knew in my heart that this was not the right advice for me and thankfully I had the strength to dismiss what they had told me and to believe in myself and stay true to knowing my own ability, even so soon after a ruptured brain aneurysm.
However, at the same time, it did get me thinking that a lot of people in this situation would just follow the advice they are being given, especially as it was being given by healthcare professionals.
Also taking into account that you are in a vulnerable situation, you are not necessarily in the best situation to make informed decisions for yourself – you are actually in a very vulnerable position.
After this meeting, I remember returning home and feeling completely broken and incredibly vulnerable.
I did continue to visit the centre for some time afterwards to receive physiotherapy and I did receive a little support in returning to work further down the line but to be honest, after this initial meeting I was put off by the limited support they could offer, let’s just say it didn’t meet my expectations.
You see I’m a firm believer in ‘mind over matter’ and that having both a positive mindset/positive surroundings and people plays a massive part in the success in anything in which you want to achieve in life, including recovery after illness.
And I felt that the mindset and the environment was not enabling that process for me. So I had to dig deep into my warrior spirit to find that positivity within to get me through this.
A second opinion
I asked my occupational therapist for advice for a second time and again she couldn’t provide me with the support I needed to return to work as she didn’t know where to signpost me for the relevant support.
So the next step for me was to approach the subject with my GP, I’m just thankful that I have the personality that I have, the confidence and the perseverance.
In these circumstances it would have been so easy to give up and I know that many people would have because every single minute of every hour, of every day, was a battle. And this is one less battle that I could have done without, trust me!
In the meantime, a huge level of anxiety was building around this subject and I was wondering why my manager hadn’t been in touch, a whole host of things started to cause me to worry me further.
Finally, the advice I needed!
I spoke to my GP about my concerns and she advised me that by law my employer should not contact me when off work sick as it can be seen as pressurising me to return. I did not know this and when I told my Occupational Therapist she didn’t know this either! Having known this simple piece of information sooner would have put me at ease.
My GP then arranged an appointment for me to see an Occupational Health advisor so that I could talk through my concerns and to be able to understand the processes in returning to work. This appointment went really well and this was exactly the support I needed, I couldn’t believe the amount of work I personally had to do to find this out when working with a number of health professionals who I would expect to be more familiar with this than me.
After this I continued to work with the brain injury unit on physiotherapy and on planning a phased return to work, they gave me some useful information that I could give to my employer in regards to managing fatigue and a phased return etc which my manager said was very useful in helping them to understand how best to support me.
A much-needed confidence boost
Following on from this I asked my Occupational Therapist for another cognitive brain test so that we could make a comparison to previous tests. I wanted and needed her professional opinion in regards to my ability to be able to work.
After doing this we found that my cognitive brain function had improved incredibly from previous assessments and wasn’t far off what the expected score would be for someone of my age who hasn’t suffered a brain injury.
I was absolutely blown away to the point where I was overcome by a huge sense of joy! This is all that I needed, some reassurance and something to build my confidence in that my decision to return to work wasn’t unrealistic at this point in my recovery.
We went onto have the discussion that I won’t know until I try…but I just wanted some reassurance and to know that I had done everything I needed before making contact with my employer. I felt that there was a huge gap in my care/support around confidence building and coaching the patient to support them in returning to work.
The support that I received around the physical symptoms and the physiotherapy was the best part, but the support in regards to the emotional and physiological effects of a brain aneurysm was limited and the onus was very much on me to find a solution and this is where I feel the NHS falls down.
Don’t get me wrong I believe we have an amazing NHS and the support I received in the hospital to save my life and to get me ‘well’ enough to return home was impeccable and I am forever grateful.
But the area where I feel there is a gap is when you are discharged from the hospital. Remember when I said earlier on that the consensus with family and friends was that I was well because I was home…I felt that this was the same with the NHS also.
My Occupational therapist said to me…
“I’d love to take the credit for all that you have achieved but I can’t you have done all of this yourself.”
So the motto the story is to listen to your intuition, your inner guidance and don’t always accept their ‘professional’ opinion if it doesn’t feel right. Do some further research, I am fortunate that I was able to do this and had the perseverance and confidence to question the advice I was being given.
What I would say is that if you are in a similar situation and you are not able to do the fact-finding, ask a family member to do so on your behalf. When recovering from brain injury there are many things that you have to delegate for a long time in order for you to recover in the best way possible.
You are a miracle!
I waited until my appointment with my consultant at the hospital before making my decision on when to return to work. I wanted to be sure that I was making the right decision and not jeopardising my recovery or potentially overdoing things as many people were telling me I could potentially be doing.
Making the decision to go back to work suddenly came with so much vulnerability and with so much conflicting advice I just didn’t know what to do. Also because I didn’t have any real noticeable symptoms other than a few headaches prior to rupture, I was frightened to make such a huge decision without having the relevant advice and confidence in that I was making my decision wisely.
I was finally given the green flag that I needed! My consultant advised that he was happy with my recovery and that I was able to return to work providing I had a phased return starting off with drastically reduced hours and as long I was able to work from home and take regular breaks to manage my fatigue he was happy.
He actually said to me…
”Look at you, you are doing amazing! You are a miracle!”
He had a huge Cheshire cat grin on his face when saying it, I’ll never forget that.
After I had gone through the above process I was left with a renewed confidence!! This is exactly what I needed to move forward. I then got in touch with my manager and felt a huge sense of relief when she said she had been waiting to hear from me.
We then arranged a meeting to discuss my phased return to work, she even went to the effort to travel to my home city to meet with me, which I was so grateful for!
During that meeting, we agreed that I would return to work within a months time so that they could have everything in place and arrange an occupational health assessment to ensure that I was fully supported.