Hi all, newbie here. Last year I had 2 major pulmonary embolisms followed by a stroke. I'm 44. At the time the PEs were treated well, but the referrals when I was discharged from the stroke got lost in the system. I had weakness in my left arm, hand and leg, poor coordibation in my left hand, numb left face and fatigue. Overall it wasn't that terrible physically compared to most people in the stroke ward. I sorted my own physio after a while, and slowly built up physical strength, but still limp a bit if I'm tired, and my face feels numb when tired.
15 months later and it's the fatigue that is devastating. I'm a university lecturer, so my brain is my tool. I started a phased return to work 4 months post stroke. With hindsight it was too soon, but I had no support other than my GP. Work have been mixed about it - lots of platitudes, but no reduction in workload until just before lockdown, very little practical support, and a complete lack of understanding from some colleagues. The students are fabulous, and we just laugh when I use completely the wrong word when lecturing.
I finally managed to get referred to the local neuro rehab team in December, and had a fabulous occupational therapist, but that support was put on hold during the virus.
lockdown has been mixed for me. If I'm fatigued I can stop working and relax, or sleep if needed. But online meetings are exhausting, and the stress of working out how work will be when we get back to campus is enormous. My partner is a wonderful support, but at times everything feels overwhelming. I have no idea if I'll ever get back to how I was before, and I'm really struggling with fatigue (which my OT described as severe). I've always been career driven, and am the breadwinner at home, it feels like part of my identity has been ripped away. I'm slowly coming to terms with my hidden disability, but frustrated others can't see it, and don't listen. I know every stroke is different, but would love to hear from people who have similar experiences - to feel less alone in this, and also to hear any tips. Thank you all for reading my long winded story. Jo