I had a bit of a bad day yesterday. I got upset about money of all things. I felt worried and stressed and had a good cry.

I guess I felt the need to write today about the other challenges I’ve come across since having a stroke, which a few people have said they had no idea about and they are unseen. I don’t like putting too much negative stuff on social media, which might make it sound a bit fake, but I wanted to say it’s not peachy all the time and I do have days where things do get to me and I get upset. Even just having a tired day, or in earlier days being frustrated if I couldn’t quite do something.

I’ve been doing well to the outside world, I guess. What people might see is that I’m out walking and trying to do a bit of jogging, Pilates and Yoga, I look “well”, and people may think I’m okay and maybe I’m over what happened with the “Are you feeling better now?” question.

It’s not as simple as that. Those things do help my mind and body which is great, but the worries and questions of the unknown are sometimes still there afterwards. Sometimes if people ask how you are, it’s easier to reply “Okay”, but maybe it makes you stronger to be honest if you’re not.

The truth is, there are so many other things you encounter and have to overcome and deal with after you’ve been through a traumatic experience. You can talk to friends & other stroke survivors, but realistically, friends can only imagine & everyone’s experience of stroke is different. Thinking about it, this is probably the same for everyone’s experience of Covid-19.

I’m qualified in First Aid At Work. I’ve learned about the symptoms of Stroke. FAST – Face, Arm, Speech, Time. That’s what we’re taught to deal with and realistically that’s where it stops, it’s never entered my mind to consider what happens after. You don’t think that one of those symptoms may cause a disability for a time or for the rest of someone’s life.

I didn’t know much about stroke other than it usually affects older people. It’s not something that I’ve ever thought about in detail or been affected by, however, one of my friends had a stroke at 21 and I think I met her probably not long afterwards.

I have never understood the battle she went through physically and emotionally. It’s not something she often talks about. I don’t think anyone can understand and since suffering from a stroke myself, I still don’t think I can fully understand… but maybe I can relate to parts?

I do know that she has never let it define her and has overcome huge obstacles in life to get to where she is now. She’s strong and has fought for what she has. She has a husband, two gorgeous children and a job she loves. She still has a weakness in one of her arms but it doesn’t stop her. Other than that and only if you notice it, you wouldn’t know she’s suffered a stroke. If she’s wanted something, she’s found a way to make it happen. She’s definitely someone I admire, especially after suffering a similar traumatic experience.

When I was in hospital I just woke up each day and did what I could. I had a shower, did physio, saw my family who visited, had my meals & medication, coloured in, listened to music but very mellow, had naps and chatted to staff. The days went fairly quickly. I kept getting assessed. I remember 5 days after I got to the ward in Harrogate, they were talking about me going home but I needed a CT scan so I had to wait till the following week. I remember feeling relieved that I wasn’t going home that day as I didn’t feel ready & it upset me to think I might have been leaving. Not that it matters, if they think you’re ready to go, you go. I remember thinking it silly to be upset about leaving hospital. It made me slightly anxious.

I still don’t know today whether I’ve fully accepted and processed what happened. A lot of people who have a stroke may be scared, angry, depressed, but I didn’t really have those feelings towards the stroke itself. I spoke and felt about it in quite a detached way.

“Life is like a river. You’re going along the river at you’re own pace, bobbing along, and you hit some rapids – you might see them coming or they might come out of nowhere. You have a choice. You can ride the rapids like the rollercoaster they are and accept what happens during & after, or you can feel as if you’re pushing a huge log against the current of the river, resisting something happening/change. The log might slow down what’s happening or a change coming, but whatever it is will probably happen eventually.”

I heard someone explain life like this earlier on TV. It was an actress from Home & Away (don’t judge 🙈) The above are my own words. It made so much sense. Whether a job or relationship ends, you can either fight it, or you can say, this shouldn’t be worth the hard work and let it go – maybe there’s a new and better door to go through? I’m not saying this is easy! Having a stroke, I guess maybe subconsciously, I thought I could either let it define me and get down about it or carry on the best I could and just know that it had happened.

I didn’t really think about how it might affect my life.

People sometimes only know what they can see, physical disabilities or changes in someone, but a stroke has a huge pyschological impact in many ways;

• Your personality
• Your emotions
• What you enjoy/don’t enjoy may change
• Work may change (you may not be able to go back to the same job)
• How you see things, positively and negatively
• Financial impact/worry
• Tiredness

These are aspects I feel are challenging to accept, understand and am dealing with. Say, for example; you can’t go back to the same job, you may feel a loss of the person you were, you may grieve for the job you can’t do, you may be angry about something which happened out of your control which has lead to the loss of your job, you may worry about finances. Your personality may change, whether there’s a big or small change, you need to try to accept that there is a “New You” and you may grieve for the “Old You”. You may find that there are things you need to work on or you may find that you go through personal development.

On top of those things, there is also the fact that your brain is having to cope, understand and work harder when doing things and it can be exhausting. People talk about the fatigue after stroke and it is completely different to any other tiredness. Having a brain injury means it might take you longer to understand and do things, depending on how it’s affected you.

My recovery had gotten to a point where I had visitors to see me at my parents. I only had 1/2 people at a time. This was all I could really manage. Mostly, every time I saw someone I hadn’t seen, I got a bit emotional. It didn’t happen often but if my partner and dad were talking and me and my mum tried to speak, I found it difficult to concentrate. It was like my brain didn’t have the capacity to have two things going on at the same time. This was new to me.

Everything had to be done in stages.

After hospital, I moved back to my parents. The silence was strange, it wasn’t something I was used to. Hospital wards never go quiet, there’s always something you can hear. I was teary when I left hospital, one of the student nurses had given me a hug & I saw her tear up. I was sad to be leaving. It’s scary to be leaving your ‘safe’ environment. I actually asked my mum to check on me when she went to bed and she also did if she woke up in the night. I guess it reassured me that someone was checking on me, as I’d had in hospital. I mainly rested at home, went out for some walks, did my physio and slowly got back into doing things day to day.

The only time I went out was to see the counsellor I was offered through the community team. I only saw her twice before lockdown. We had luckily spoken about taking big tasks and putting small step by step plans in place to get there.

I went to the small village cafe, it was quiet but it was a small step to going out somewhere. I went to a supermarket with my mum, within a couple of minutes of walking in I got a bit teary but it passed. I don’t know why? Maybe relief and being proud of myself.

Small tasks and things we do every day seem much harder and can be emotional. I can be talking about anything, nothing and all of a sudden my voice will be shaky and I’ll either nearly cry, not be able to get my words out or just cry. There might not even be a reason for it.

After 30 days of having a stroke, unless you still have any medical conditions, you can drive again. I was allowed to. I drove once just over a month after my stroke. About 10 minutes, it was okay but again, I got emotional. I haven’t tried since unfortunately.

So there are a few goals I managed in the short space of time I had.

Even to move back to my home in Harrogate had steps. Spend a day in Harrogate, which I did. Try and go somewhere I used to go for lunch, somewhere maybe a little busier. Remember, I didn’t like a lot of noise so far. I also felt anxious to be in town where people might see me and possibly stop to talk to me. I managed this once. All went okay. Where we went for lunch had a little group in who were fairly loud so we sat further away from them & I managed. I didn’t see anyone I knew until we were walking back to the car and I did see a member. She was lovely, gave me a big hug. I was okay chatting but when I walked away I cried again for a few minutes.

I was missing a friends wedding & my cousins wedding in March because it would have been too much seeing people & the noise as well. I’d have found it tiring too. I did have another goal before lockdown of seeing a small group of people I’ve seen numerous times for a good friends baby shower. I was happy that this would be my first attempt to see a bigger group & that it was probably somewhere busier. My partner was going to be nearby so that if I’d had enough I could leave.

I even mentioned to a colleague the week lockdown happened that I’d try and build myself up to walking into work to have a cuppa. This fills me with anticipation because the last time I was there, I left in an ambulance. I knew I needed to build up to this and feel ready.

Unfortunately, the baby shower didn’t happen, so I didn’t have chance to see how I got on and how I found it. I ended up moving back home probably quicker than I was going to (emotional again when I left my parents).

So I guess I’m saying that it’s not just physical recovery I’ve needed. I was offered counselling through the community team and even though I’ve only had 2 sessions and a phone call since lockdown, it’s helped me a lot.

The recovery I hadn’t been able to try now has obviously had to wait. On one hand this has made me slow down and take my time. On the other hand, it may make it harder when I can get out and try. I am fortunate and grateful that the set back is temporary and at some point, I will be able to try these things.

Worrying about money the other day should be the least of my worries. I’m still here which is the main thing. I’ve been very fortunate for the support from work from people getting in touch seeing how I am, to financially.

I go onto Statutory Sick Pay soon. I hadn’t really thought about the impact financially until yesterday. I sat down to work out my income and outgoings. Luckily, I haven’t spent much in the last couple of months meaning I will have money to help.

It wasn’t just that which upset me though. I know everyone is in the same boat right now about not knowing when they’ll be able to go back to work & what their income may look like. I had no expectation of when I might be ready and work want me to be 100% ready to come back, so there’s no pressure at all. My consultant said I’m okay for desk work but knows it’s affected me pyschologically and so does my counsellor. As she said, it needs to be me telling her when I’m ready to go back.

My current sick note takes me to about the 8th June. I think before lockdown, I thought maybe August/September I may have been ready to go back. Now, I don’t know. Work will need to be open & I will then need recovery time to get back into things. I guess I thought I may have only 2 months or something of a lower income but now it may be more.

I guess the way to flip it around is that it’s temporary. I’m lucky that I haven’t spent money the last 3 months and have that to help me. I have my health, my family, friends, a roof over my head, food and water. I have SO much to be grateful for.

For a moment, I worried about something which is out of my control, I let it get to me, which is only natural and will happen every now and again. With Covid-19, a lot of people will feel the same. I’m teaching myself meditation. When you mediate, you learn to allow thoughts you have into your mind, but don’t allow them to settle. You’re not trying to stop these thoughts rather acknowledge they’re there, let them come and go and allow them to move on. It’s easier with some things than it is others and I think my brain just can’t handle things sometimes, it gets overloaded quickly, so I have to talk about it, take stock but accept how I feel too.

I love these two quotes (the first I found whilst trying to find the second, maybe it knew my thoughts);

If you’re sad, it’s okay to acknowledge your sadness.

If you have pain that leaves you at a loss, it’s okay to talk about your pain.

The reason we have difficulties is that we are unable to accept the things that cannot be changed.

Let them be and see what happens.

Love For Imperfect Things – Haemin Sunim

I’ve tried to be as honest as I can be in this part of my blog. This is my experience, it won’t be the same for others. I want to try and explain other aspects of what I have been affected by, hopefully share some things which others may be able to relate to in their own lives and how I try to overcome these things when it can be difficult to do so.

Next blog will be my thoughts on my 38th birthday and a bit of a reflection which I was going to post first, but I felt this was more important to share.

Thank you for reading and sharing my story and experiences ❣❣❣