It’s all a little confusing

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Hello to anyone that reads this. I ‘apparently’ had a small stroke on the 4th June, told it was likely a migraine to have a confirmed on the 6th June following an MRI. It all happened very quickly. We didn’t really ask any questions, took the medication and went home. The letter I received a few days later said I’d had a small embolic infarct in the right middle cerebral artery. What has followed has been weeks and weeks of weird sensations, denial and feelings of resentment towards myself.

I found out on the 6th October that I have a PFO. Not sure what they are going to do about it. I’m still waiting on my post stroke review that should have happened in August but they have a backlog.

The hardest thing for me is I don’t know what’s normal about my body anymore. I panic about the smallest things, although I’ve only been up to A&E twice since the 6th June, once on the night of the 6th June for a reaction to the meds and Monday just gone as I had this strange feeling that my head was shaking, slurred speech and dizziness. They did a CT scan have said it’s a migraine, although since I’ve been on clopidogrel I’ve not had a migraine. I’ve found the support following my stroke to be non existent. GP won’t have anything to do with anything that’s Stroke related and direct me to my consultant, my consultant directs me back to GP. Needless to say, I’ve resorted to just living with whatever it is that’s happening.

I returned to work quite quickly (just one month off with a phased return) but that’s becoming a struggle as I work very long shifts, but I refuse to give up. I’m starting to think I’ve not had a stroke and I’m just going mad making all these problems up. Constant dizziness, nausea, tiredness, pains in fingers and toes, dead arms, I can’t even think of the others.

I will say my biggest help was reaching out to Stroke Association a week after it happened. I was incredibly emotional at that point and they validated how I was feeling and were able to provide me with information to give to family for them to try and understand.

I’ve got my review on the 27th October so hoping to find out more then.

Shelly

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@Shelly.B hi & welcome to the community. Sorry to hear you’ve had a stroke.

Everything you are feeling is very normal after a stroke & you really aren’t going mad. You will likely experience all sorts of weird feelings & they will make you feel like you might be having another stroke. I know after my stroke I had all sorrs of weird sensations going on in my head & imagined they were all sinister. They weren’t and over time they have improved. You will learn in time what is normal for you…it is different for everyone.

In relation to work I would suggest you have gone back too soon & that will have contributed to your recent a&e visit. Your brain needs to rest lots in the first 6 months & taking the time you need to recover is not giving up. Ploughing on regardless may be worse for you in the long run. It was 18 months before I returned to work & then did a 3 month phased return & then had to reduce my hours to part time as fatigue & dizziness mean I can’t fo full time hours any more.

Hope your appointment on 27th goes well. Write down all your questions so you don’t forget to ask them.

Best wishes

Ann

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Thanks for responding I really appreciate it. Im glad to read you took the time to recover as much as you could.

The dizziness is something else sometimes, coupled with the nausea. It has served me well though on the catamaran back from the Isle of Man, I didn’t notice anything more than I have been dealing with anyway but a lot of people where really sea sick, silver lining! I know now that it was probably too soon but I panicked really about needing time off in the future as I was convinced I had something wrong with my heart :grimacing:.

I am trying to involve occupational health now to reduce what I’m doing at work. I was originally told by my employer that it wasn’t necessary as it would only be a risk assessment but I’m learning now that it’s much more than that.

I think I’m just having a ‘week’, really resentful and emotional, but I’m glad it’s pushed me to reach out :heart_hands:

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An Occupational Health assessment is a really good idea. There are probably many adjustments they can recommend to help you at work. You definitely need more than a risk assessment. I have many adjustments in place still & i have been back at work over 2 years now. Without them I don’t think I could work.

Taking time to recover is really important and if uou need to take a bit of time off now then seriously consider it. It’ll help in the long run.

Your health is the most important thing. Take it easy.

Ann

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Welcome to our club.

Everything you are feeling is normal. You are bound to worry until you get answers. Are you a member of a union? If yes, get them involved, It can be useful to have support in any meetings with management, if only to remember what was said.

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Hello Shelly - Firstly I would like to welcome you to this community and say well done for reaching out to the Stroke Association (SA) for help. There is absolutely no need for you or anyone to struggle on their own when there is help available :slight_smile:

I note that Ann @Mrs5K has already responded with some very excellent and advice and I am happy to say I echo all she says. Her knowledge and experience are first hand as she has been there, done it and got the t-shirt :slight_smile:

Having joined this forum, you will find plenty of helpful information and helpful members willing to offer very good advice, all of which is based on their own experiences. You should not hesitate to ask anything.

Also, you might find it beneficial to talk to friends and family and also to take someone with you when you go to see doctors or stroke consultant.

Reading the above quote from your introductory note makes be both angry and sad and its implication is in my view totally unacceptable. You absolutely must not accept what is happening and you must not blame yourself or doubt yourself. What is happening to you is real and no, you are not going mad.

Dig out the discharge letter from when you were discharged from hospital following your stroke and see what it says. It will or should say what happened to you, what was done for you and what and who will take care of you post discharge from hospital. I expect this would likely be your GP from a medical perspective and possibly relatives from a domestic perspective.

Regardless, your GP has a duty to help you and whether that is through their own knowledge and expertise or through referrals to other experts will depend on how much your GP knows about what help you need and their capacity to help you.

What is not acceptable is for you to be bounced from the GP to the Stroke Consultant and back. One of them must take responsibility. Clearly that is not happening right now and it is time for you to take action.

You can talk to your GP and the Stroke Consultant and let them know you are not happy and they need to do something. You also should find out the complaints procedure and lodge complaints against the GP and the Stroke Consultant. Do not be afraid of consequences - there won’t be any negatives.

Stay calm, write things down, keep a diary. Take a friend / relative to meetings.

On the work front, I think Ann has covered this and I don’t have anything I can add.

I wish you all the best.

Namaste|
:pray:

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Thank you both so much for the replies.

firstly, @Mrs5K I am indeed part of the union and will be reaching out to them today when I hear about the oc health referral. I didn’t think I’d ever have to use them in search circumstances but I’ve paid enough in so I should utilise them.

Second, @ManjiB i will consider what you’ve said about the complaint and you’re right, nothing bad will come of sharing my experience directly with them which is essentially all it is.

I honestly feel so much better (in regards to asking for answers and support) reading the responses.

best wishes :heart_hands:

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Hello @Shelly.B i’m sorry to read that you are not bing adequately cared for. It seems that those of us who make the most noise get the care we deserve. Best of luck, it’s your right to get the care you deserve!

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There is much truth in this and it is my belief that it is a rule of life.

We may agree, we may not agree, but if you look, you will almost certainly see this rule applying in all walks of life. From when we are children, for example siblings, it will tend to be the child who shouts the most that gets the most attention. From when we are at work it will be the person who is knocking on the menagers door who gets promoted - this will not be based on ability to do the job, but the ability to “demand”. There is no meritocracy. Oftentimes, you will see reward for failure.

Look around you and you will see many examples. Maybe it is just me, but I see this more often than not.

Life is not fair, but you have to accept it sometimes - but sometimes you have to fight back. You have to choose your moment. There is no point in wasting energy and time if you think or know the outcome will be one that is not fair - accept your losses and move on. By so doing, in my opinion and experience you will be less stressed and more happy.

Not sure where this came from - perhaps I have been reflecting in the few days on events that have happened to me or around me. Wherever it came from it is not new to me - it happens and for some, it happens more often than for some others.

I thank you :slight_smile:

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You will find almost endless support here on this forum, people on it are very engaging and understanding and have experience, wisdom and sound advice. I still tune in five years later. Stroke seems to be a challenging area of medicine for many medical professionals, possibly only those who have specialised in the field, perhaps, grasp the reality for so many survivors.

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Thank you @ManjiB life is NOT as you say a meritocracy we are selfish complicated beings who take looks and many other shallow facets into consideration.The ‘advanced’ human is the one with high EQ who takes each of us at face value,but the way we treat others is shrouded in past experiences and our perceptions when we need to wipe the slate clean for each new human encounter. For example I got onto a bus with my dog,to take her to the vet,the bus driver wouldn’t let us onto the bus because she was a Rottweiler and wasn’t wearing a muzzle.he allowed his perception of the breed of dog to cloud his judgement when my dog would never hurt a fly! we had to walk the 2hours to the vet rather than enjoy the 10mins bus ride!

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Hi @Shelly.B

Welcome to the community, I’m sorry to hear of your stroke and the difficulties you’ve been facing with getting the care you need.

As others have said you aren’t going mad, there are lots of feelings and sensations that happen within your body after having a stroke. I’m pleased to hear that you’ve already reached out to the Stroke Association and that you’ve found it helpful. I’m sure you’ll find this community just as helpful for your continued recovery - there is a wealth of knowledge here for you to tap into.

If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.

Anna

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Sorry to hear of the challenges before you but we are all here to support you. No journey is the same and the fears, self doubt and worry are real to us all. My advice is to log every feeling, thoughts and steps and to share your journey with supportive family and/or an online family. Stay consistent to your recovery and understand it’s okay to not be okay. After months of despair I woke up one morning and appreciated that I no longer lied prone 20 hours a day and that with medicine, diet changes and exercise I was on a path of becoming a more healthier version of my former self. It has been difficult but I’m grateful to be here able to face it.

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Hello @SIRSMOOTHE - Welcome to the community.

I really like the way you have responded to share your experiences and thoughts on being a stroke survivor. I am sure your offer of support will be much appreciated.

I find your words soothing and inspirational and I really like what you say here

That you see yourself becoming a more healthier version of your former self is one of the most inspiring things I have read on this forum :slight_smile:

Thank you for such a concise and inspirational first post.

I wish you all the best on your journey to becoming a healthier and happier version of yourself.

Namaste|
:pray:

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@SIRSMOOTHE just popping by to say hi & welcome to the community. Good to hear that you can now see the positive progress you are making.

Thank you for sharing uour experiences.

Best wishes

Ann

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Hi Shelly. As everyone has already told you, your feelings are very normal and it’s hard to wait and let your body heal itself. I had a TIA in August caused by a blood clot in my leg that went to my lungs and one of the clots went to my brain via a PFO I am now on Eliquis for six months and then in January, I will go see the cardiologist to see what they want to do about the PFO if anything. I am 71 years old It’s such a strange thing to know I’ve had a hole in my heart since I was born and never knew it, and sometimes I get fearful that it can happen again in the meantime yet I am told that since I am on anticoagulant, it would be very rare so I am resting and waiting to go see what my next step will be. I also do feel like my body has betrayed me -even though I know better -because I have been one of those that has been extremely healthy exercise eat a natural diet, and I just assumed that I would coast through life Without anything major hah. I was shown differently, but I am thankful to be here and I know that God has a purpose, and that he will walk with me through this new journey on which I walk. I pray for wisdom for my options if and when I have choices to make and take a day at a time, it has caused me to stop and notice the simple things in life. Keep us posted.

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Hi Shelly B and SIRSMOOTHIE,

Welcome to you both and hope you both find hope, inspiration and some answers from the kind and knowledgeable people on here.

Shelly I can sympathise with you greatly it took me almost a year yo get to where I am after initial misdiagnosis, similarly my local support services are non-existent as is GP - it’s partly state of NHS which I can forgive. Good luck on your journey and wishing you well for the future. Hope the appointment on the 27th goes well and similarly that work matters are resolved to your satisfaction as I’m getting there with mine afer pushing too hard forst time so take care.

SIRSMOOTHIE a truly inspirational post and wish you all the very best on your recovery journey.

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