My story began exactly 4 weeks ago today. Hubby and I were spending a few days on Dartmoor doing some long walks as it was his 70th birthday and where he was born. 12-14miles on his birthday in glorious spring weather. On our last morning I woke up and as I walked to the loo it felt as if I was on a boat! Yet I felt well. I didn’t feel sick or have a headache. I had never felt like this before. Having always been in good physical health I was completely confused. I’m a retired Stroke Rehabilitation Nurse. Stroke rehab was my last discipline before I retired and then worked part time in the community. In my work as a stroke rehab nurse even I was more familiar with the classic warning signs, facial droop, difficulty lifting and arm or forming a sentence. I was initially really annoyed that I couldn’t manage to walk on the moors as it was another lovely sunny day, and was instead clinging onto Hubby’s arm! So we went home and I slept through out the journey as the road seemed a bit odd. I phoned the GP surgery and had a call back. " I don’t think it can be a stroke me says, I can do this and that and stand on one leg" I might as well have said that I could fly to the moon and back. What an idiot was I? So the GP was sure I had BPPV and prescribed cetirizine with instructions to double the dose if necessary and do some side to side exercises to move the ear crystals. The thought of having a stroke was my worst nightmare.
A further day passed, and a night and then things got worst, much worst when I woke with double vision, was more unbalanced walking and had problems forming a sentence. Off in the ambulance, after the lovely paramedic quickly ascertained that I could be having a stroke, to our local A and E in Devon where I was assessed and had a CT head. Which was negative.
Being the weekend I was assessed by the duty consultant the next day and found to have bidirectional nystagmus. I had an MRI also negative and eventually concluded that I had had a neg MRI posterior stroke as both CT and MRI cannot always show that area of the brain, so diagnosis was based on presentation, symptoms and response to treatment. 300mg Aspirin. I was outside the treatment window for thrombolysis.
My care and treatment in The Royal Devon and Exeter hospital was fantastic. I felt very safe there and in good hands. And so began the rehab work to get me up and walking with one of my old OT colleagues encouragement, although frankly all I wanted to do was lie flat and keep my eyes shut. I still thank fully had no paralysis or weakness and my speech was fine. I felt very relieved and grateful. I came home in 5 days and have been followed up by the community Stroke Support team. The Occupational therapist helping met myself goals and boundaries. A fantastic service. Now run by my old manager.
It’s very early days and I realise now the degree of denial I had surrounding it all. I had days when I felt elated. Relieved perhaps. When I sit still I felt fine. I consider all I am going to do in a day. The gardening I am going to do, the seeds I will sow and the weeds I will pull up. ( my greatest passion) but I can only manage a few minutes. My balance being the main issue and my eyesight, which although I am no longer seeing double does not appear to be in sync with my body moving. I look drunk and the more I do the worst it is and then the next day I can do nothing. I’m learning the meaning of Stroke fatigue. So I am learning to pace myself and be patient and have rigid boundaries.
I tell myself I am very lucky, which I am, indeed others do too, but there is still a lot that I have lost, for now anyway.
I am so sorry you find yourself on the patient end of all this.
I have been feeling guilty ever since my husband had his stroke last year because I have / had been in nursing all my working life but dismissed his slight issue with a " dead " leg at first as it was on rising and we both thought he had slept heavily on it. No other red flags or even questionable signs. He even had a shower thinking the warm water would help get him moving !
I still look back searching my mind for something I missed ?
Anyway the great news is that you are home and getting help with rehab.
The fatigue is awful isn’t it.
Baby steps as they say but I just wanted to wish you all the best on your journey.
Ellie
@Theukuleleplayer my stroke also presented with dizziness & nausea. I felt like I was on a boat. Given my age I never did anything about it for 3 days & it was day 4 before I got a drs appointment. To say I was shocked when they said I had had a stroke was an understatement. I try not to think about whether the outcome would have been different if I had sought help earlier as I can’t change that. My dr was great as he recognised straight away that I had probably had a stroke so sent me straight to A&E. I know that’s not the case for everyone & more education is needed in that area I feel.
Don’t beat yourself up for not realising. After the odds probably would have suggested BPPV or vertigo or similar before a stroke was considered even if you hadn’t told your dr it couldn’t be a stroke.
I still get that boat feeling especially when fatigued but not as bad as initially.
Best wishes
Ann
I had room spinning dizziness at first then like being on a boat after that, for at least 4 months constantly, then it tapered off. I still get it (7 months) but not too often.
I’m 33. There is no way I would have guessed dizziness would have been a stroke. So it wasn’t till the next day when I woke up with a ‘dodgy’ right hand side (arm and leg) and slow speech that I knew something was up.
I try not to beat myself up about not going the night it happened to A&E, but realistically they wouldn’t have MRI’d me that night anyway
Doesn’t do any good does it? Or does it? 
If I succeed at not beating myself up about it that’s great, but I’m not saying that’s my thought process all the time 
Agree, some days I feel able to tell myself I was just being human and humans make mistakes. Other days I’m annoyed but maybe it’s a stupid pride thing. It has made me very bodily aware now and I freak out at the slightest abnormal issue.
I think being overly concerned about our health for life now is another unwanted stroke side effect we all got!!
I think just because a person has a profession as yourself we think we should be aware more but our brains can trick us into denial as you mentioned ? My stroke wasn’t A typical so I too was in denial…what me? No it’s not a stroke I said…but it was. I hope you are feeling a little better now? X
Absolutely Sue. I was only saying to someone today about this. When I woke in the morning initially with the imbalance issues I still thought I would be able to walk across Dartmoor where we had been staying for a few days! It was bonkers. I was clinging to my husbands arm and could only walk a few yards from the car.. I guess my brain was just not processing what was going on to the point of complete denial. . TBH I am still rather unrealistic about what I can do each day. I think I can do this then that and my body puts the breaks on!
But do keep it that way. It might not come back today but tomorrow or next week or next month. The brain has a greater chance of recovery by you thinking and trying to do the things your used to. You only have to consider coma patients and what brings them out it to realise why it’s necessary to try (being the operative word) to do things your brain is familiar with 
And we all know how trying that can be 
Lorraine
@EmeraldEyes…yes! In my head I see myself doing lots of things I’m as yet struggling to do. The minds a funny thing, is it processing my hopeful thoughts for the future or missing my past life…confusion alert😙
Exactly! At least the weather brightens the day and its too hot for gardening so a good excuse to do less. bws Hilary
Hi Lorraine, thanks for your reply and encouragement, made me feel more positive that I’m doing the right thing rather then undoing any progress as I really find pacing myself difficult.
BW’s Hilary
I don’t do much as it is lol
It’s about what you can do when you can. The way I saw it, it wasn’t me pacing myself but my brain. It will only let you do so much at a time, it has its limits and it will keep you to them. My brain would confuse and scramble my thought process when I’d try and push beyond the fatigue. That’s what the fatigue is there for the scrambling is a last resort. It’s like a motor overheating in my brain, so I know when I’ve pushed it too far.
You can’t undo progress if you’re doing what the body does naturally anyway; it’s all exercise and in particular, for the brain. All the physio stuff you have to do is training and readying your body and mind e.g. stretching your stroke arm out with a resistance band is training your stroke arm to reach for a cup in the cupboard. So whatever you do is still relearning/retraining your brain, it needs all that you can give it, including rest. And because you still so early post stroke, you’ll need more rest and frequent. But it does get better, you just have to learn patience
Lorraine
How wonderful to see all this positivity and encouragement and dare I say it realism?
Well done all and keep pushing yourself as hard as your mind and body allows. You’ll know how far to go and when to take a break 
I take my hat off to you all, @EmeraldEyes , @Sue1958 , @Theukuleleplayer.
Hilary - I’ve always wanted to play the Ukulele (well not always, rather ever since I first became aware of it which was about 20 years ago).
Are you able to share any tips on how I can get started?
What would be a good starting Ukulele to buy?
Thanks in anticipation.
Hi! I first had a Ukulele as a child but really never grasped how to play it. However the desire to stayed with me. I bought a novelty Uke from the Cavern Club some years ago and again couldn’t tune it or play it so there is laid in it’s box until last autumn when I saw a poster locally advertising a local group that were playing so I did a Google search and discovered that the group were part of a U3a group. U3a stands for “University of the Third Age.” it is however nothing to do with any university. It’s an national organisation for people of retirement age and over. Every u3a group has a number of interest groups. I’m not sure what the age limit is so you may be too young. I would suggest joining some local ukulele group whether that be a u3a ( if there is one local to you) or other group which you could find via social media. I learnt really quickly in our group and ours is by no means polished. The leader showed me about the all important tuning of the Uke and basic chords and I was off. We do little local gigs which is also fun. Not all groups incorporate singing along but ours does. As for buying one, I didn’t use my Cavern club one although it is a proper instrument. I got mine second hand on FB market place. The better ones are made in Indonesia or Hawaii, not China. Mine is a concert size Pono one up from a soprano which is the smallest, made in Indonesia another good make is a Kala. If you join a group they often lend one to beginners and then you can hear what sound you like. Give it a go. It’s a great little instrument and has grown in popularity these days. Msg if you have any more Qs
Thanks Hilary - I will bear this in mind.
I too was misdiagnosed with BPPV, however, in my case, over three months, I had challenged their diagnosis and suggested it might be lack of blood or oxygen to the brain. They stuck to the BPPV diagnosis, so I had the stroke after three months.