Anxiety about upcoming assessment

Clareh37

Clareh37

New member
Hello. I’m new here. I found my way here from reading the book Unmasking Autism.
I’m 63 years old, and a few years ago (whilst learning about autism for my work), I came to realise that I was also possibly autistic. My brother was diagnosed AuDHD, and my father is undiagnosed Autistic, so it doesn’t seem unlikely.
I have always struggled, and most of my life I felt broken, wrong, useless, and always completely confused about why I found it so hard to fit in or make friends. I actually didn’t have any friends until I started drinking … which I think also says a lot.
Anyhow, I’m writing this to ask if other people awaiting their assessment were terrified of actually discovering they are NOT autistic after all. I felt such a profound sense of relief once I figured this out for myself (along with terrible waves of grief), … but if I am found not autistic, then I’ll be back with the belief that I am simply a broken human being, someone that just doesn’t work properly, and that terrifies me.
I am lucky enough to be in a position where I can afford a private assessment, so I have not had to try and explain myself to a doctor to be referred, so I don’t have any solid ground to base my belief on … just my own experience and research.
Do other people feel like this? And if so, do you have any tips to help me through this stage?
Thank yiu
Clare
 
Hi Clare!

I promise you, if you have close family members with autism or ADHD, the chance that you do too is HIGH not unlikely. Both of these tend to run in families lol.

Now let's talk about your 'broken human being' comment. I can say this until I'm blue in the face, YOU have to BELIEVE it but I hope if I say it out loud you can start changing your outlook. You are a wonderfully weird and interesting human being, you're unique with an amazing personality no one else on the planet has. You're intelligent, capable, strong, and you are doing great. The problem is not that YOU are broken and useless, the world should have done more to ACCOMMODATE you, account for your differences, your struggles, and your strengths. You don't work improperly, you work differently, and that's okay. Certainly around here, we cherish and celebrate all kinds of people who work in all kinds of different ways.

I was diagnosed very young and clueless, and my mum fought like a dying animal to get me all the support I needed, but I can imagine finding out you're not what you thought would be... distressing. I'm currently having a shoulder problem, and I THINK I know what it is but if I have to go tomorrow and find out it's NOT that, or the doctors can't figure it out right away, I'll also be feeling quite lost. We're not quite in the same boat, but I'm maybe on a raft some 50 feet to your left!

My best advice would be to take it a day at a time. Be kind and gentle to yourself, don't beat yourself up for your past struggles. You were misunderstood, and humans have a nasty habit of pushing away things they don't understand... including other humans. Once again, please know you're not broken or useless. The world is changing ever so slowly, and eventually all of us neurodiverse folks will be able to feel truly seen, supported and understood. I wish you nothing but comfort, love and happiness. Whatever happens, you'll be okay.

Thank you,
UnicornSpoon 🦄🥄💚
 
UnicornSpoon said:
Hi Clare!

I promise you, if you have close family members with autism or ADHD, the chance that you do too is HIGH not unlikely. Both of these tend to run in families lol.

Now let's talk about your 'broken human being' comment. I can say this until I'm blue in the face, YOU have to BELIEVE it but I hope if I say it out loud you can start changing your outlook. You are a wonderfully weird and interesting human being, you're unique with an amazing personality no one else on the planet has. You're intelligent, capable, strong, and you are doing great. The problem is not that YOU are broken and useless, the world should have done more to ACCOMMODATE you, account for your differences, your struggles, and your strengths. You don't work improperly, you work differently, and that's okay. Certainly around here, we cherish and celebrate all kinds of people who work in all kinds of different ways.

I was diagnosed very young and clueless, and my mum fought like a dying animal to get me all the support I needed, but I can imagine finding out you're not what you thought would be... distressing. I'm currently having a shoulder problem, and I THINK I know what it is but if I have to go tomorrow and find out it's NOT that, or the doctors can't figure it out right away, I'll also be feeling quite lost. We're not quite in the same boat, but I'm maybe on a raft some 50 feet to your left!

My best advice would be to take it a day at a time. Be kind and gentle to yourself, don't beat yourself up for your past struggles. You were misunderstood, and humans have a nasty habit of pushing away things they don't understand... including other humans. Once again, please know you're not broken or useless. The world is changing ever so slowly, and eventually all of us neurodiverse folks will be able to feel truly seen, supported and understood. I wish you nothing but comfort, love and happiness. Whatever happens, you'll be okay.

Thank you,
UnicornSpoon 🦄🥄💚
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Thank you! 💕
Your reply made me cry … but in a good way. I’m
Ve been oscillating wildly between thinking I’m obviously autistic, and then beating myself up for being ridiculous and ‘reaching’, and that I’m going to be sneered at in the assessment. I shall try and take your words to heart and be kind to myself.
Thank you so much 🙏
Clare

Ps. And good luck with your shoulder problem. I really hope it goes smoothly and helpfully at the doctors 🤞🏻
 
Clareh37 said:
Thank you! 💕
Your reply made me cry … but in a good way. I’m
Ve been oscillating wildly between thinking I’m obviously autistic, and then beating myself up for being ridiculous and ‘reaching’, and that I’m going to be sneered at in the assessment. I shall try and take your words to heart and be kind to myself.
Thank you so much 🙏
Clare

Ps. And good luck with your shoulder problem. I really hope it goes smoothly and helpfully at the doctors 🤞🏻
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Hi Clare,

Of course! I'm glad I could help. Whatever individual does your assessment with you, I want you to know that their entire job is to be kind, respectful, helpful, and truthfully and genuinely get you exactly what you need. A doctor that sneers at you is no doctor and you have a right to complain about it. I would expect such incidents are exceedingly rare and I expect you'll be completely fine. I wish you the best of luck in your assessment!

Thanks,
UnicornSpoon 🦄🥄💚
 
Hi Clair. Your post reminded me so much of my own build up to my autism assessment, 2 years ago. I am 62 yrs old and always felt different growing up and I learned to accommodate whoever I was with, peer groups etc. "Masking" I used humour to get out of situations I couldn't cope with or I played the "bad girl" role, anyway, there is also a lot of autism and adhd in my family too, Mam, brothers, my kids, my Grandchildren, that is why I went for the assessment, to help my Granddaughter understand her autism. I was the same as you, worried about being thrown out/sneered at! For thinking I was autistic, but as you have said, everything we have researched about autism fits us. It explains our feelings of not fitting in and making a mess of relationships, friends and work! The assessment went well and the therapist was very respectfully and kind and seemed to want to help me, so after worrying every day for 2 years!! I was given an autism diagnosis, I think I am also adhd but I think I am too old to wait for 9 years to find out. I hope you can try and not worry too much leading up to your assessment but I know that's probably impossible to do, I read through the criteria for autism and also did the pre-assessment questionnaires and scored quite high. There are so many other women out there and on this site who have been, are will be in your position, I wish you hope and belief.

Love from Pola bear 🐻
 
Polarbear said:
Hi Clair. Your post reminded me so much of my own build up to my autism assessment, 2 years ago. I am 62 yrs old and always felt different growing up and I learned to accommodate whoever I was with, peer groups etc. "Masking" I used humour to get out of situations I couldn't cope with or I played the "bad girl" role, anyway, there is also a lot of autism and adhd in my family too, Mam, brothers, my kids, my Grandchildren, that is why I went for the assessment, to help my Granddaughter understand her autism. I was the same as you, worried about being thrown out/sneered at! For thinking I was autistic, but as you have said, everything we have researched about autism fits us. It explains our feelings of not fitting in and making a mess of relationships, friends and work! The assessment went well and the therapist was very respectfully and kind and seemed to want to help me, so after worrying every day for 2 years!! I was given an autism diagnosis, I think I am also adhd but I think I am too old to wait for 9 years to find out. I hope you can try and not worry too much leading up to your assessment but I know that's probably impossible to do, I read through the criteria for autism and also did the pre-assessment questionnaires and scored quite high. There are so many other women out there and on this site who have been, are will be in your position, I wish you hope and belief.

Love from Pola bear 🐻
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Hi Polar bear

You are never to old to investigate your neurodivergent self. I received my ADHD diagnosis aged 62 after only 12 months from seeing my GP, via the right to choose pathway, (unfortunately only available on the NHS in England ). A further 9 months wait for medication titration. A combination of self understanding, learning new skills and approaches in line with my strengths and challenges, and medication has proved transformative in my life and for those around me.

If you think you may be ADHD I would encourage you to look further. Self identification is valid and helpful, however you will not be able to try medication without a formal diagnosis. AuDHD is different from being purely ADHD or purely Autistic. For me, understanding I was AuDHD, helped explain so many of the contradictions in my life. Desperate for order and routine, whilst constantly self sabotaging with being unable to follow them. It explained why I was always in pursuit of stimulation to the point of exhaustion. It’s having a brain in constant conflict with itself and never knowing which bit of me will show up.

I recognise all of the self doubt and gaslighting prior to my assessment. The inner voice saying “If you got to this stage of your life, how can you possibly be Autistic?”. However, the more I understood about Autism and the more late diagnosed Autistics I met, the more convinced I became.

If you would like to further exploring ADHD, I’m happy to suggest sources of information I found helpful. Between 50 and 70% of late diagnosed Autistic adults have significant ADHD traits, often sufficient to meet DSM 5 criteria.

Best wishes for 2026,

Wade
 
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Thanks for this Wade. Sounds very familiar, the wanting routine and sabotaging it and seeking risky, stimulation etc. When I self referred for the NHS autism assessment, I also asked for referral for ADHD but don't think it happened and when I mentioned it at my assessment, the therapist said there is a 9 year wait for this! It put me off as I will be 70 by then!! God that sounds old. Still coming to terms with being adult never mind aged.

But thanks Wade.
 
Clareh37 said:
Hello. I’m new here. I found my way here from reading the book Unmasking Autism.
I’m 63 years old, and a few years ago (whilst learning about autism for my work), I came to realise that I was also possibly autistic. My brother was diagnosed AuDHD, and my father is undiagnosed Autistic, so it doesn’t seem unlikely.
I have always struggled, and most of my life I felt broken, wrong, useless, and always completely confused about why I found it so hard to fit in or make friends. I actually didn’t have any friends until I started drinking … which I think also says a lot.
Anyhow, I’m writing this to ask if other people awaiting their assessment were terrified of actually discovering they are NOT autistic after all. I felt such a profound sense of relief once I figured this out for myself (along with terrible waves of grief), … but if I am found not autistic, then I’ll be back with the belief that I am simply a broken human being, someone that just doesn’t work properly, and that terrifies me.
I am lucky enough to be in a position where I can afford a private assessment, so I have not had to try and explain myself to a doctor to be referred, so I don’t have any solid ground to base my belief on … just my own experience and research.
Do other people feel like this? And if so, do you have any tips to help me through this stage?
Thank yiu
Clare
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Hi Clare,

Welcome to the forum and Happy New Year!

What you are describing is very common to all of us late diagnosed Autistics.

You have already self diagnosed, and that is more than good enough. I too was frightened that having worked out that I was Autistic, an assessor was not going to see my Autistic traits. I know that I am a very proficient masker, at least in the short term, but it is obvious to an experienced assessor. In stressful situations it is increasingly difficult for me to keep it up. I was also worried I’d have to look for another explanation to account for the way I felt and behaved. I was right in my diagnosis and in all probability you are too.

As has been said, just be yourself. If you are masking, a good assessor will see past this. As good as we think we are, there are always subtle tell tale signs that give us away. They will be expecting you to be highly anxious and a good clinician will put you at your ease. It makes their task easier. Don’t forget, this is quite an objective process, with very specific criteria that they will elucidate. It’s not an unstructured subjective opinion. They have to be able to justify their conclusion in a report.

I really do wish you well. I’m sure you will be absolutely fine and you’ll get the result you need. As I said at the start, self diagnosis is the most important. Few of us are privileged enough to have a formal assessment, but it really isn’t the be all and end all. Having got to this point probably 95% will get a positive diagnosis.

Good luck, stay positive and remember you’re welcome here whatever the outcome. You know you’re Autistic and that’s all that matters.


Best wishes,

Wade
 
Polarbear said:
Thanks for this Wade. Sounds very familiar, the wanting routine and sabotaging it and seeking risky, stimulation etc. When I self referred for the NHS autism assessment, I also asked for referral for ADHD but don't think it happened and when I mentioned it at my assessment, the therapist said there is a 9 year wait for this! It put me off as I will be 70 by then!! God that sounds old. Still coming to terms with being adult never mind aged.

But thanks Wade.
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Hi Polarbear

I had no idea I was ADHD. I knew I was Autistic and that is why I went to my GP. My initial attempt was 8 years ago, but was pretty much fobbed off by my GP who continued to medicate me with anti depressants. It was the usual, “but you can’t be, you make eye contact, are highly educated, are married etc”. After further burnouts and the relief and revalation that came with the Covid lockdown, I knew I couldn’t go on as I was. I went back to my GP and said I was Autistic and would like a formal assessment. In her incompetence, she sent me for an ADHD assessment instead! This was only discovered when I was sent all the pre assessment questionnaires. I went through with the process anyway and yes, I’m an ADHDer, much to my surprise. A further 9 month wait eventually resulted in my Autism assessment and diagnosis.

Having raised a formal complaint with my GP practice, they have now completely overhauled their screening process, such that anyone asking for an ADHD or Autism assessment is offered both screening test and then simultaneously referred for both assessments if indicated. All staff, including GPs, have to take training in all aspects of neurodivergence. Neurodivergent patients are offered double appointments and quiet waiting areas as routine. One of my little victories!

Your therapist may have been correct in the time scale for ADHD assessment using the NHS services, but “right to choose” means that you can seek an assessment from an alternative provider, who has been vetted and approved by the NHS, and whose diagnosis will be accepted by the NHS. The waiting times are typically less than twelve months. You get to choose which provider and you can look up waiting times and particularly important, their expertise in diagnosing girls and women (often mis diagnosed and certainly underdiagnosed due to inherent cultural and gender bias).

I hope that Clare’s assessment goes well. I’m sure both you and UnicornSpoon will have given her the reassurance that we all need when facing an assessment, the result of which can be life changing……hopefully in a good way.

Lovely to talk with you.

Best wishes

Wade

PS. If it helps, I’m now reconciled to being an eight year old inside the body of a late middle aged man (euphemism for old). I don’t think this will ever change, I’m not convinced I want it to!
 
I like your attitude Wade! I will try to cultivate mine and accept my 8yr old self in an old woman's body...lol...love the image of that!! But it is a bit yuk.

Loved talking with you too.
 
Hi Bluelyn,

Well done on staying the course of getting a second assessment. This is not easy, so give yourself lots of credit.

I really do understand your anxiety. I felt exactly the same. I thought I had made the diagnosis, the explanation for all the difficulties I’d had in my life, the way I thought and behaved, my sensitivities. I was so concerned that I would have to find another explanation if they didn’t give me the diagnostic confirmation. As it happens I was right and I strongly suspect you are too…..particularly as you already have been through one diagnostic processes. If you think you are Autistic it’s 99% certain that you are.

I’m nearly twelve months on from my diagnosis of ASD and eighteen months from my ADHD diagnosis. I’ve learned so much about myself and neurodivergence in this time, largely as a result of NDSA Pathway programme and engaging with the neurodivergent community. I now realise that the official diagnosis is largely irrelevant in many ways. If you have recognised that you have autistic traits that is all that matters. You are welcome here. You will find help and support no matter what the diagnosticians find. If you don’t get the diagnosis (and I think you probably will) it is more likely to be the fault of the diagnosticians or the diagnostic processes they are using.

If you do get an Autism diagnosis, don’t expect the NHS to fall over themselves to offer help or support. There is very little for late diagnosed neurodivergent folk like us. I would strongly recommend the Pathway programme from NDSA, which gives you lots of first class information as well as mentoring with a trained Autistic mentor. This helped me immensely. My experiences were validated, they helped build my confidence and self esteem. You don’t need a certificate or report. Remember, probably 90% of adult Autistics never get an official diagnosis. That doesn’t mean that they are not Autistic and experience all the difficulties and prejudice that officially diagnosed Autistics have.

I’m happy to share the things that have helped me if you need someone to point you in the right direction to get started on your pre or post diagnostic journey.

Meanwhile, keep well, stay strong and welcome, come and join us.

Best wishes,

Wade
 
Hi Bluelyn,

Please be kind to yourself. This is a huge. Going through the diagnostic process is draining.The realisation that you are different takes time to understand. Give yourself time to come to terms with this massive change in your life.

For many of us there are incredibly mixed feelings that we struggle to appreciate and process. Leading up to my assessment I could not have been more anxious. It felt like all the exams I’ve ever taken rolled into one. The waiting for the results and report was worse than doing my finals. What helped me was having a partner and friends who knew me and accepted me for who I am. The result made no difference to them and how they saw me.

I was happy and relieved to get my diagnosis. I then felt angry that I’d been undiagnosed and misdiagnosed for so long. I felt angry at the delay in getting an assessment. I felt a deep sense of grief for the life I could have had. I felt frustrated there was no post diagnosis support. I could get these feelings all at once or separately. It could be emotionally overwhelming and confusing. They could come at anytime. None of this is unusual……but then you only know this when you start to talk to other late diagnosed Autistics.

The best support I found was meeting and talking with other neurodivergent folks. Just knowing you are not alone is so comforting. Being able to be open and unmasked is such a relief. Having your experiences and feelings validated was, for me, the most positive and affirming experience. It is worth looking for adult Autistic support groups. NDSA have a number of in person meet ups in the Derbyshire area and also a number of online meetings. I don’t know how you feel about joining meetings. For me it was very difficult at first. You don’t have to have cameras or mics on in zoom meetings. You can just listen. It takes time to build confidence. Once you do become more confident and are able to engage, you will get the benefit and support of our community.

Managing burnout is one of the most challenging aspects of being Autistic. You have to give yourself time….lots of time. You have to find the things that bring you joy and restore your energy levels. This is different for each one of us. Regaining balance in your life is imperative. Start with the basics….sleep, nutrition and exercise. For me, walking and getting into nature always helped. Don’t push yourself beyond your capacity. It won’t help. Be patient and kind with yourself. If you keep pushing yourself back into the situations that precipitated you into to burnout, the result will be the same…burnout. You will need to identify the changes that you need to make in order to thrive. Recovery and being well will allow you to contribute. That is why right now you must prioritise yourself and being well.

Let me know if there is anything I can do to help.

Best wishes,

Wade

PS I love your avatar 😁
 
Hi Bluelyn,

I’ve been thinking a great deal about your reply and particularly that you felt so strongly about wanting to contribute to society. I wanted to add some of my thoughts. ( All part of me being an Autistic slow processor, I often return to old conversations once I’ve formulated my ideas and thoughts into words).

I recognise what you are saying and identify with wanting to contribute. This is an Autistic trait, we want things to be fair. We feel it very deeply when we can’t contribute in the way we feel we should. It seems to us that we are being unfair by not contributing. I struggled with this for long periods of my adult life when unemployed or recovering from burnout. Lots of money had been spent training me, but I simply didn’t have the ability to work safely when burnt out. This filled me with shame and guilt. I don’t want you to feel like this about yourself.

I would just ask that you try to see things a little differently. Firstly, you are important and valuable as a person in your own right. Your value is completely independent of your paid employment. We live in a world that undervalues or gives no value at all to many of the things that are vital to society. We undervalue care, particularly emotional care. We undervalue many female roles, particularly bringing up children or caring for the old or disabled.

We all contribute in a multitude of ways, most of which don’t attract financial reward, throughout our lives. We are all dependant on one another at some points in our lives. This in no way diminishes our worth as human beings.

Simply being part of our community makes you valuable. You are giving to society by being here, sharing your thoughts and experiences. Being part of a mutually supporting group is helping others and giving to society. We have been conditioned to only see paid employment as of value to society. Nothing could be further from the truth. It is very easy to see how this perspective lowers our feelings of self worth and ultimately our self esteem.

I understand this is a really difficult time for you at the moment, but I would just ask you to consider reframing your view of yourself and how you contribute to society in the light of what I’ve said. You are valued for just being yourself and I’m glad you are here.

Be kind to yourself and keep well,

Wade
 
Hello all. I have somehow missed this whole conversation after the initial (lovely) reply to my post. Reading all the follow ups now is so reassuring and I love how supportive this group is, I will try and engage more from now on. And I hope that you are all finding the support and care you need - Bluelyn, Camel, Polarbear … I am thinking of you all.

I haven’t had my assessment yet … it’s scheduled now for the 3rd March, and after all your support, I’m trying to be as positive as I can about it, rather than simply terrified!

We can do this! ☺️
 
@bluelyn Good luck with your job search and have been there with the job centre Agents (I'll call them that as an AI Agent could do their job) so know the job app game (apply for anything) you have to play

I think finding the right job is key , my job could align very well , but there are aspects that do not and take their toll that make it unsustainable and I think employment being sustainable is a difficult ask. I wouldn't say impossible but stats aren't in our favour. Even being employed is just a tick box - and I suspect many are underemployed in order possibly to make it sustainable, and not being able to build the career path they thought they wanted or what others expected (my dad has many time told me that X has a good job but never said it to me) : I think this difficulty with sustainable employment applies whether your late diagnosed (and here mean in 40s or after) or someone getting diagnosed much earlier say 20s., as disclosure and adjustments at work is easier in theory than practice for the majority.

@Clareh37 good luck with your assessment in March , it is life a changing moment when you can begin to understand and be kinder to yourself and "find your tribe" you may look at what you do and even friendships that actually are counterproductive to your wellbeing, and carve a new path forward
 
Clareh37 said:
Hello all. I have somehow missed this whole conversation after the initial (lovely) reply to my post. Reading all the follow ups now is so reassuring and I love how supportive this group is, I will try and engage more from now on. And I hope that you are all finding the support and care you need - Bluelyn, Camel, Polarbear … I am thinking of you all.

I haven’t had my assessment yet … it’s scheduled now for the 3rd March, and after all your support, I’m trying to be as positive as I can about it, rather than simply terrified!

We can do this! ☺️
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Hi Clare37

Very best wishes for your upcoming assessment. I’m pleased you have found support here that is helping during this difficult waiting period. You may not get a result immediately after your assessment……I found the waiting for the phone call agony, constantly replaying the assessment in my head over and over again.
Please don’t hesitate to post during this time if you need reassurance or would just like to talk.


Remember, no matter what result you are given, you are always welcome here.

I’m sure we will all be thinking of you on 3rd March.

You can definitely do this! We are here for you.😊

Wade
 
bluelyn said:
Thank you Chilli, to stop the repeat burnout we need work that ingites us and environments that stimulate not over stimulate us, otherwise we repeat the pattern of burnout, but getting the job centre to understand that and finding work to support that well let's say since 2004 I've not managed to achieve it and I have 17 more years to work
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Agree the work needs to be a good fit in many ways - but perfect is difficult to find

Forget the job centre - other then ticking their checklist - so you don't get a penalty

have you used AI to see what possibly roles it suggests ?
 
Yes trains especially commuter ones into London by myself are the worst.

I think how I was when I landed in the office after car, train and tube the last time I tried is probably why my boss is OK not to ask my to go there, havent been to my office for over a year now !.

Off peak I can do a train if there some benefit like seeing someone for a meal (but not rush hour commuting) and I'm better travelling with someone on public transport, even the tube is is better with someone although I'd rather not. The car is no probs in comparison.

I think many jobs have an artifical list of qualifications - yes some things you legally need a qualification - but I'm pretty sure many jobs its setting more of a barrier. Plus if the role is something you know you have the skills and even a passion for, then I'd apply preferably by connecting with a person else the CV scraping tools will probably weed out your application.

I'm terrible at interviews - especially when its a role I'm more interested in. I've not asked for adjustments - but if I have to look again I might, although I do very limited disclosure in both work and outside work. Have you thought if you would you ask for adjustments at interview stage or whether you'd disclose you're ND ?
 
its such a difficult time to find work at the moment - so try not to be too hard on yourself

It's another area where I think the support is very lacking - although maybe contact NDSA as I think they run a course that may help
 
Clareh37 said:
Hello all. I have somehow missed this whole conversation after the initial (lovely) reply to my post. Reading all the follow ups now is so reassuring and I love how supportive this group is, I will try and engage more from now on. And I hope that you are all finding the support and care you need - Bluelyn, Camel, Polarbear … I am thinking of you all.

I haven’t had my assessment yet … it’s scheduled now for the 3rd March, and after all your support, I’m trying to be as positive as I can about it, rather than simply terrified!

We can do this! ☺️
Click to expand...
Hi Clare37,

I just wanted to wish you all the best for your assessment tomorrow. Just be yourself and you’ll be fine. I know you will be a bundle of nerves, we all were, it’s fine to feel anxious.

I’ve said this in a previous post, whatever the result you will always be welcome here, whatever the assessor says.

I have my fingers crossed for you.

You can do this!🤞

Wade

P. S. When you’ve recovered, please let us know how you got on