As I’m writing this it is Mental Health Awareness Week and also Stroke Awareness Month in May so I thought it fitting to write about Stroke and the effects it can have on Mental Health.

I have used information from The Stroke Association website along with my personal experiences.

There are a lot of physical effects you can suffer following a stroke (which people see/notice); arm, hand and leg weaknesses, not able to swallow, not able to speak, not able to read/write, not able to walk & facial droop. From a medical point of view, doctors treat the stroke and don’t necessarily consider the psychological effects it could have on a person afterwards. This is where community stroke support team counselling and charities like The Stroke Association, Different Strokes and Headway come in useful because they help you understand what/how you’re feeling, help rebuild your life after stroke and provide support groups and helplines to talk to volunteers and other survivors. A lot of people don’t realise the other effects it can have on a person which is why I wanted to write this.

The following is taken from The Stroke Association;

Stroke can have all sorts of different effects. Many are physical – that you can see and recognise easily – but there can also be hidden effects, like emotional changes. Although we cannot see feelings or thoughts, changing emotions often lead to a change in behaviour which may signify that all is not well.

The Stroke Association

A stroke can effect your behaviour or emotions and you may feel differently. This could be partly due to physical damage in the brain.

Different parts of the brain control different functions within the body, including how we feel. When people have physical weaknesses/disabilities caused by stroke, part of the reason is from where the injury is in the brain and this is the same for our emotions. If the part of the brain which controls your emotions has become damaged, there may be a change in how we think, feel and behave.

As well as the physical damage, it is also normal to be affected pyschologically because you’ve suffered a major traumatic life experience.

Stroke happens, without much warning and it can take time to come to terms with what’s happened, what your body has been through, that your brain has, in effect, been hurt and damaged and also with the changes it can bring to your day to day life.

One third of stroke survivors report emotional difficulties after their stroke. A lot will fade away with time and you feel like your old self, some may be more persistent and you may need to learn coping mechanisms to help you deal with them.

Here is a list of the most common changes in emotion after stroke;

• Depression (the most common change)
• Anxiety
• Emotionalism (having difficulty controlling your emotions)
• Personality Changes
• Anger
• Loss
• Fear
• Denial
• Acceptance
• Shock
• Guilt

I’ll now briefly go through anything I feel I have suffered with since my stroke. What they are, how they have affected me and how I’m trying to overcome anything;

Anxiety

Anxiety is a physical and pyschological response to a scary situation, for example; you may feel a sense of unease or fear. Physically, there is an increase in blood flow to your heart and muscles, preparing us for action. You may experience; sweating, rapid heart rate, shortness of breath, dizziness and tremor.

It can rise suddenly or develop slowly over a longer period of time.

It is very common to experience anxiety following a stroke. There may be worries about your health or other aspects of your life.

Here are some commonly reported worries, which can be heightened if living alone;

• Having another stroke or TIA whilst asleep or in public.
• Being unable to communicate in an emergency.
• Being unable to drive or return to work.
• Taking medication – worry about side effects.
• Falling.
• Feeling embarrassed in social situations.
• Understanding help available from the NHS and social services.
• Waiting for test results and follow up appointments.
• Never feeling better.
• Feeling family members have an increased risk of stroke.

It’s natural to have some anxiety and it will often reduce over time. However, it could be persistent and last a long time which may feel overwhelming and you may have developed anxiety disorder which you may need help with.

The below are things to watch out for;

• Feeling irritable, having difficulty concentrating or getting tired easily.
• Avoiding things you would normally do; going shopping or seeing friends.
• Having trouble sleeping because you are worrying.
• Spending a lot of your waking hours thinking about things you’re worried about.
• Having a persistent feeling of dread with physical sensations like a racing heart or restlessness.

My experience of anxiety …

I have suffered with post stroke anxiety. Listed below are things I was/am anxious about;

• Leaving the safety of the hospital ward when I went home.
• That the stent they fitted was blocked – I worried something may happen and the clot in it may cause another stroke or that I’d move my neck or head and cause another dissection.
• Not waking up again when I went to sleep. I think this was worry about whether I was “fixed”.
• Going to my first counselling appointment because I hadn’t done anything like that before. I worried about what they’d ask and what I’d say.
• I still get anxious or a little worried going to the supermarket if I need to – during lockdown my partner has been most of the time.
• I worried about being back in Harrogate seeing people when I’m not expecting it and them either knowing and asking how I am or me explaining what happened.
• Noise and busier situations – unfortunately, I haven’t been able to see how I am with this because we went into lockdown.
• Actually meeting up with a group of people – again I’m yet to try this. Obviously in the current circumstances no one is doing this. I worry that I’ll find it even harder but hoping that more time will make it easier 🤞
• Going back to work.
• Thanks to Covid, I now worry about getting ill and being really sick. If I get the cough, could I suffer another dissection?
• When I managed to have visitors, I’d feel anxious if they were late. I planned my day around someone coming. I’d worry about them getting lost or if they’d had an accident on the way.
• Waiting at an appointment, especially one time in a doctor’s surgery where there was noise quite early on … I actually went and stood outside where it was quieter.
• Waiting to go for my last CT scan and then waiting to get the results, then waiting to find out what they meant.
• Getting blood test results. The main one as to whether I had “sticky blood”.
• Going out for a walk by myself, I’ve been okay with this but last week it was busier and I felt more on edge.

With a few of the above points; (buisier places, more noise, being around more people, driving by myself, running by myself, etc), I’m still feeling anxious when I think about them or do them. I went for a walk with a friend last week and worried about it; Would we be able to stay 2 metres apart? Would we be able to avoid others with distance? Is it the right thing to do even though we’re “allowed”?

Others may be going through similar thoughts especially during the pandemic, but for me it’s not just the worry about the situation, it’s the worry about whether my brain will be able to cope with it. When I went for a walk by myself last week, I saw someone I knew. We stopped to talk, their dog was barking, another dog was barking in a garden and there was traffic going past. I found it really hard to concentrate and hated the noise. After that walk, I actually felt very drained. I realised I find that type of situation easier if my partner is with me.

What is/can help me?

Even though there’s quite a lot I’ve listed above, I feel lucky in that I think it’s fairly mild. I do still manage to go out by myself etc even though I may struggle.

I have a counselling session every other week usually (offered through the Stroke Community Support Team). I’ve had this even through lockdown which has been great. So, I’m helping myself by talking. I’ve also had support from The Stroke Association. There are groups set up for survivors to talk to each other and specific young survivor groups. Unfortunately, they have been stopped during lockdown so I haven’t been able to go to any. I do however go on some of the facebook groups and there are a lot of Stroke Survivors on Instagram and Twitter which is great as I might post something which people relate to or they might post something I may relate to.

I have a few friends I talk to as well.

Other things I’m trying are meditation, I listen to an app when I sleep. I still don’t sleep through, but I do think it helps. I do Yoga after I run twice a week and Pilates 3 times a week which helps with my concentration. I read and also just watch TV or go for a walk. I write my blog or in my diary. I also relax a lot as well, especially with the weather being so good, it’s been easy to do! 🌞🌞🌞

I have tried a bit of CBT (Cognitive Behavioural Therapy) with my counsellor which tries to help you change your way of thinking.

I’m sure it is getting easier and will continue to do so and I’m thankful to have the counsellor and The Stroke Association Support Team to turn to if I need to.

Emotionalism

Emotionalism can arise with many neurological conditions (those affecting the brain and nervous system). It often happens after a stroke. It’s best described if you have become more emotional than usual or have difficulty controlling your emotions. It can also be known as Emotional Lability, Pathological laughing/crying and Pseudo-Builbar affect.

You will find you can have very intense emotional reactions when talking to people, watching tv, carrying out tasks, or even thinking. These emotions may reflect how you’re feeling and they may be expressed in a strong way.

Your emotions may be very close to the surface and the smallest thing can set you off, for example; you might get upset more easily or cry at things you wouldn’t have before.

You may cry or laugh for little or no reason. Laughing is less common but may happen at inappropriate times. You might be crying one minute but then swing to laughing quite quickly. These emotional reactions do not usually mirror how you’re feeling. They can seem out of place and can come and go quickly unlike when you’re genuinely upset or happy.

Someone being kind to you, asking how you are, or talking about something which makes you feel emotional naturally can be triggers of these emotions.

Emotionalism and me …

So, I feel like I’m a fairly emotional person anyway.

Emotionalism if I’m honest and having told my counsellor about certain things, is probably what I’m experiencing sometimes.

It was worse earlier on. Earlier on I was suffering upset from the trauma of what had happened. I had better days and worse days.

Earlier on if I had certain thoughts about what had happened I’d get teary. When I was told my stent was blocked I was upset. When I left the ward in Harrogate to go to my parents, I cried a bit. When I saw the consultant after 8 weeks I cried, even though it was good news. When I left my parents to go home I cried. When I first went to the supermarket and drove for the first time… you’ve guessed it – cried! When I saw certain friends for the first time after my stroke I cried.

These weren’t long episodes but I felt like I had little control over crying.

I cry at things on tv, I can be talking about something really random and not be able to say the words because for some reason I get upset, even though there may be no emotional connection to what I’m saying. If I’m talking about something positive I usually start getting teary. I also still get a bit emotional if I’m explaining to someone about what happened, which is an understandable reason.

With time, I’m getting better. I spoke about it with the counsellor the last time we spoke and she said she hopes it gets better with time which I think and hope it does. She also said that I should explain to people who I’ll be around that if I do randomly get upset that I’m okay and that it’s something I’m suffering with and hopefully I’ll be able to have more control over.

It helps to talk, to say what happened out loud. After talking to Leeds Cares and the Harrogate Advertiser more recently I do have to take a breath and try and move past getting upset to get my words out and sometimes I might have a little cry afterwards. The Stroke Association says the more you talk the more people will understand how you’re feeling and what they can/need to do, if anything and that it is part of your stroke and not cause for concern.

Sometimes I think it’s just relief …

The Stroke Association also suggest telling people how you would like to be treated if you become emotional;

• Being told not to cry will not help to stop your tears and might lead to further distress.
• There’s no need for others to feel embarrassed or to avoid talking about topics that might cause you to cry. In fact, this may even delay your recovery.
• If you don’t want to get emotional for example, if you are out socially, ask someone to distract you. They could do this by changing the subject.
• If you find it hard to control your emotions when other people are emotional – tell them. People do not have to change their behaviour but at least it will not be a surprise if you cry more than usual, or you choose to leave the room.
• Don’t let people ignore you, or leave a room unless it is what you want.
• Encourage people to treat your emotionalism as a minor inconvenience and continue the conversation as if it will go away.
• Touch can be helpful – on the arm or hand or even a hug if it’s appropriate. This can make you feel more emotional but you might prefer this. It’s okay to cry, and it might make you feel better.
• Tell people if you are genuinely upset so it isn’t mistaken for emotionalism. You will still need empathy and understanding from time to time.

It’s important with anxiety and emotionalism to keep a check on it as it may be that it doesn’t go away and may be that it does need treating, possibly with medication.

As I mentioned before, I do think my symptoms are lessening. One of those points from The Stroke Association is very ironic at the moment which is the one about touch on your arm or hand or a hug. During this pandemic I’m finding it extremely difficult that this is not allowed. I think part of me doesn’t want to see others because I can’t have a hug. I can’t even imagine my stroke having happened during the pandemic as it’s so hard not to have that human contact with the ones you love. At least the restrictions are lifting a little now and I’ll just have to settle for distance meet ups for the time being. I’m so grateful that I was able to see and hug anyone I did before lockdown. The way I’m seeing it is that there’s nothing I can do, so I’m just trying to get on with it and will take a bit of what I can. ☺

Personality Changes

The following is taken from The Stroke Association;

Personality is a difficult concept to explain. We could describe it as a combination of behaviours, thought patterns and feelings. People who know you well may finish your sentence or predict how you will respond to something because you will normally be quite consistent. A stroke can cause changes to your personality so that to others you may seem like a different person altogether.

Sometimes your character traits may be reversed, for example; if you were mild-mannered before, you may be more aggressive now. Or, if you have always been loud and outspoken, you may be more passive. More often, however, existing personality traits are exaggerated. A stroke survivor may not be aware that their personality is different or deny that they have changed but friends and family might be more aware of how different you are.

Personality Changes and whether it’s affected me

So there is a list in The Stroke Association info. I’ll try to be honest about myself.

The first listed is; impatient and irritable. I don’t know what my levels were of this before my stroke but I think I’d say I’m experiencing both of these. I have felt impatient waiting for someone to call when they said they will, or see me at a certain time. I felt impatient waiting in the surgery for my first counselling session as she was running late, I think part of this was anxiety. I’m irritated by certain programmes on tv, noise level and certain music I used to enjoy I just hear as noise. If I can’t do something I get annoyed with myself. I get upset/annoyed with myself over knocking myself or cutting myself because I bleed for longer and bruise very easily on the blood thinners I’m taking. The other week I managed to spill hot water over myself, complete accident but I got annoyed and cried afterwards.

Strangely, in this pandemic, although I hate it and wish I could get back to my recovery, I feel surprisingly patient and worry things will start up too quickly. My mind is saying assume the longest time, then I’m not disappointed. Maybe this means that I’m irritated and impatient about the things that actually don’t really matter.

Other Changes …

I do know I’m putting myself first more, something I rarely did before. I’m not spending as much time messaging people to hear from them, if it means I don’t hear from them then I don’t and although it might have upset me a bit a few weeks ago, I’ve come to realise everyone has their own life. Also, I may not have forgotten that I had a stroke but others may do. I love helping people and putting them first but I think I’ve realised there are other ways in which I can do that in which I may not suffer myself.

The other things I’ve noticed after talking things through with the counsellor are that I’m more apprehensive and self-aware. I’m nervous and not as confident about certain things or in situations I wouldn’t have been before. I’m quieter as a person.

I have more awareness about how strong I am and that I’m a bit of a survivor in different aspects of my life.

I guess I’m learning more about myself and my mind. What serves me best and what makes me happy rather than others and doing what others want.

Knowing my own mind and learning how to is maybe where I’m at at the moment.

To finish …

I am lucky in the sense that I haven’t really suffered; Denial, Anger or Depression.

I probably have briefly suffered Loss, Fear, Acceptance, Shock and potentially Guilt (not thought about the last one but when you’re writing, things come to light).

Loss – I’ve suffered a temporary loss of who I was although it may turn out to be longer term in some ways. The person I was before my stroke is still there in many ways, but I have also changed. I have different priorities and perspectives of what’s important, who I want to be and what I want to do. This isn’t necessarily a bad thing either, in fact it may be a good thing, finally slowing down a bit and doing what’s right for me in the future.

Fear – This one has eased. I did have fear that I may suffer another stroke or dissection, that I may not wake up when I was asleep one night. In passing that my left hand may never improve. That I wouldn’t be able to do exercise again. That they may have found an underlying health issue.

Shock & Acceptance – I feel like these two go together. Obviously I was shocked about having a stroke and how it was caused. I worried that pushing myself so hard at work had led to it. How could it have happened at my age with no underlying issue? It did happen though and I know it did, I’ve never been in denial about it although I would say I am a bit dis-attached to it. I’m not sure I’ve accepted it. I think I have now but one day down the line it might hit me more that it happened.

People obviously have different mindsets and ways of dealing with things. I’m grateful that I’m a positive person and have dealt with everything surprisingly well. Yes, I have moments of good and bad and just because I physically look okay, doesn’t mean that all of a sudden I’m better. My stroke still only happened just over 4 months ago, it’s not a long time and for 2 months of that we’ve been in lockdown, where a lot of my next bit of recovery has been halted. It’s also taken away a lot of support I had and expected to have following my stroke. It’s changed I guess. I think I’ve adapted to relying on myself to be strong because of this.

A lot of people may struggle coming out of isolation and lockdown but as a stroke survivor I am also battling a brain injury as well. So there may be similarities between people returning to work and the fears and anxieties which I relate to, in time it will get better, but it may take me longer than some.

Advice

Talk … if you’re struggling, Talk! As the BT advert used to say, “It’s good to talk”. If you don’t want to talk, try to write. Get a diary so you can write down your thoughts, you will feel so much better getting things out of your head and feel lighter.

Fellow stroke survivors, call the helplines available; The Stroke Association, Headway, Different Strokes. Ask your GP or community team if they have a counsellor. Use social media groups but be careful what you ask. If you have medical questions, ask your consultant or GP as you will get far too many conflicting answers and experiences on groups. You will find many others will be experiencing the same feelings/issues as you.

I hope this explains to anyone reading the issues a stroke survivor may be dealing with and what I personally have gone through and am still going through.

As always thank you for reading, stay safe and be kind 🌈🦋🙏🙏🦋🌈