Feeling Depressed.

I had my stroke in December 2020 around 10 months age and for the first few months everything was fine I was under the care of the Louth Stroke recovery service a great bunch of people who got me back on my feet and able to a lot of normal things, lucky for me I am a left hander and the stroke affected my right side, I started to walk with at first two sticks and now one, even completed the Stoke Assocation 10,000 steps a day challenge in 120 days, got back into photography and thought I can cope with this, but progress has now stopped I seem to have been left on my own by the NHS and no longer get calls from the stroke association which i really enjoyed, I know life will never get back to what it was before stroke but am finding it really hard to adjust. My husband doesn't appear to understand to the outside world i look well and happy but inside i am not and have a lot of anger. Is it normal to feel like this your thoughts would be most welcome.

Barry. Lincolnshire.

 

Hello Barry, sorry to hear you've hit a slump. I had my stroke September 2020, I had a lot of positive intentness for the first six months before I took a dive. For me, it was when neuroplasticity slowed down, and progress became less significant, albeit, when I did make further progress, the percentage was higher but not as frequent. I attend a twice weekly Zoom session with other stroke survivors, and now the second group has begun meeting face-to-face down the pub, so the contact has been beneficial. You may have a similiar group in your area, or part of England (I'm in Wales). If not, the Stroke Association has a programme called Here For You, I've started using that (it runs for six weeks), and the association pairs you up with a trained volunteer who will call once a week, and you have a half hour phone conversation. 

Being left on one's tod is not uncommon for us, family and partners are not always as empathetic as we would like. I am like you, outwardly, I appear "fine", but I've got cerebellar stroke syndrome, which means I have a cluster of hidden symptoms that are primarily visible to me. I've had one angry outburst, and hope that is the first and last. It came out of the blue, and so I believe that it may have been a result of bottled up frustration and resentment, and wasn't even rational, so perhaps my brain was also confused. I've thrown myself into trying to understand my condition, and to be part of the stroke conversation, so I can be as proactive as possible to help others in the same boat. I'm participating in an eight week research study (WATERS - wellbeing after stroke) through Manchester University. I think it is important to have this likeminded interaction, otherwise, it can feel like being on an island. I listen to podcasts about stroke, read books, and contact fellow stroke survivors whenever I can. 

Have you got in contact with the Lincolnshire - Stroke Recovery Service (https://www.stroke.org.uk/finding-support/support-services/lincolnshire-stroke-recovery-service)? Services and support groups are there but it often takes a bit of rummaging around the net to find them. 

Rups

Dear Barry

Before the pandemic, support for stroke survivors was better. But even then there was a roller coaster of help ending with a dead stop. I felt that I had been a passenger on a cruise ship crossing the pacific and then I felt that I had been put in a row boat and cast adrift.

The NHS is not geared to helping us recover. We have a multitude of problems, exasperated by the fact that no two strokes are the same. But we share many common problems.

Recovery can not be made by anyone other than you. Lots of us will try to help, but it's really all down to you.

I would start with a change to the description. It isn't my stroke. You don't own it and you certainly don't want it.

you have already grasped that you will not be the same as before. That is a massive factor to handle. The number of couples that split is very high. Us SS must try to ease the burden put on our partners.

we can often get outside more than before. So we tan nicely. The drugs we take will also tan us, so we look well. So many people will comment how well you look, the comment is all too often said out of our earshot. You can't see brain damage,, which is a possible retort.

the brain is still trying to correct the damage. This typically goes on for two years. Brain doesn't communicate which makes recovery less easy.

I can't help you with the anger, I don't get the anger, but I know it bugs many SS.

if you smile the brain thinks all is well and reacts favourably. So i smile many times each day. A false.fake or forced smile will do nicely.

you need to be positive, again a way to kid your brain.

there are a million of us out here, so you are not alone.

you are progressing so fast, done so much, that you deserve a pat on the back. Well done Barry.

watch out for other illnesses that slide in to our troubled lives. We cope with so much that other things don't really show. Heart diseases, Parkinson's and so on.

and of course watch out that another stroke doesn't get you. That is the ultimate failure.

best wishes

colin

 

 

Barry, all of this is very normal. There comes a point when support fades away and others take priority. Our depressions go unnoticed and we are left to our own devices. Many people have no idea how we feel. Went for my booster jab today and bumped into two neighbours. The husband asked was I getting better. I just said I was still working to improve, because it's not worth saying stroke is caused by a brain injury and it's a case of battling on rather than getting better.

I do go to three 'normal' exercise classes for seniors and I find that helpful. Others in the class say that they have seen a big improvement in me over the last three years (my stroke was over five years ago). That means a lot because they see me regularly. Even when I have medical appointments the stroke is hardly mentioned. Try your best to cheer up..we all have down days.

Thank you for your kind words, I also go to the gym three times a week for sessions based on my needs, I find it hard accepting that I can only do small amounts then have to rest, I use to be very much a outdoor person, 

Thank you Colin for your thoghts, I look ok on the outside to most folk, but inside the stroke is tearing me up, I use to be such a positive guy but having to give so much up, I know I need to find more to do but it's so easy to just watch TV.

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Colin is right. 

Thank you for your comments Colin. I haven't been on the forum for a couple of weeks, because, like Barry I have been struggling with anxiety. The impacts of my SAH (sub arachnoid haemorrhage) hit me hard. I seem to have spent the months since 'the event' as I call it, just getting on with things. Like you said people tell you how well you look. For the first time I actually didn't say 'thank you'; I was truthful and said 'actually I feel dreadful' and went on to explain how fatigue had hit me and how I have just been told I have PTSD as a result from the trauma of my 'stroke', and am now working through this with support from my GP and medication.

I have learned more from other people who have gone through strokes, despite them having their own individual experiences.

This forum and 'Different Strokes' on Facebook (thanks to whoever on here mentioned it' have helped.

Barry I was recommended (amongst other things) some self help guides. https://web.ntw.nhs.uk/selfhelp/

Hope someone finds these useful.

And......sometimes just sitting and pouring things out on here has been a help!

Thank you 

Just do a little bit. Your brain does not need a big change, well not yet.

a good goal would be to discover how much sleep you need then go to bed at a regular time to accommodate . 
 

I am having an op on my eye tomorrow, not sure if I will be able to read for a few weeks.

best wishes

colin

Hi, I feel the same, I look okay on the outside to everybody but inside I’m crying, I try to get on with things in the morning as this is my best time of day, so I rush around trying to get everything done but not to wear myself out too much as well.
Does anybody else feel really low in early evening, sometimes I could just sit in a chair and cry, I don’t feel sorry for myself, just really really feel sad, maybe it’s the anxiety medication wearing off as I take it in the morning with breakfast
I’m just so tired of feeling sad and low in the evening, I try watching tv, reading, sewing etc…
I’m nearly two years post stroke
Love to all