Sticky Blood-Hughes Syndrome Support
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Personality changes?

If the old pre-illness me met the current me then I dont think he would recognise him and might not want to spend too long over a pint with him. I dont know if anyone else has noticed any behaviour or personaility chnages since they became ill?

Im not sure if its the brain lesions, autoimmune disorders, raging tinnitus etc or the consequent depression, but much of what I liked about me seems to have greatly diminished - the sense of humour, joi de vivre (sic), the quite quick brain, strong concern for others, enjoyment of the little things (like spending an hour watching a bird on the widow sill or eating cake and watching Poirot). I also seem to keep saying inappropriate things or acting in unusual out of character ways. Nothing arrestable! Just kind of annoying, like interrupting people mid-sentence.

I stayed with some friends in London this week (when I went to London Bridge Hospital) and I think I drove them a bit crazy! Maybe I had presumed too much of their friendship whereas I had not known them that long. It felt a bit awkward and so I went to stay with a very old and dear friend (who invited over other old and dear friends) and for the first time in a long while I felt that the old me was beginning to creep back. I also felt the brain fog lift. This friend has a phd in some obscure subject and we chatted about it and I felt that I kind of kept up. Though he might tell a different story! Whereas last week I found that I was struggling to write a shopping list.

I thought that maybe my brain had not gone as far south as I had feared. To Bristol rather than the Isle of Wight! Who knows.

btw forgot to mention in last post that consultant seemd to think I might have sjorgrens as well as the other stuff. Im hoping not.

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How old are you, if you don’t mind me asking? ( yes... I’m asking for a reason...and how old were your friends you stayed with?) This is a “ maturity accelerator “ on top of a “ paradyme shifter.”

If also brings those issues info sharp focus for the just under 30 / just over 30 something crowd... and cleave the two apart . You from them.

Gotta tell ya- I’ve found it doesn’t get a lot better either. Sorry... but... and here’s the hidden gem. It’s clarifies your life. You’ll waste no time. You will know who is ,” real” very quickly. Your diseasevis like litmus paper for truth and treasure of character in others.

I’ve found out who my dearest friends are, and who are not. And made new ones along the way- just a few dear ones.

But that’s life! That’s how it is- no one needs flimsy friends. Time to reach deep. ( like you already figured out when you bailed and joined the origional old tribe and found your feet back under you again!)!

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Thanks Kelly.

The first people I stayed with were perhaps quite wrapped up in their own issues and I should have taken more account of that possibility. It was a mum (76) whose son (50) had lived with her for most of his life. It was only on staying there for longer than a dinner party that I realised how unhappy their household was. I was maybe an intruder upon their on going grief and that was unwelcome. The son was depressed because he felt he had done nothing with his life and the mum was depressed because she felt disappointed in her son. Maybe she had wanted grandchildren. And her disappointment came out in fairly constat criticisms of her son. tbh it was embarassing listening to it.

I think you are 100% right about the litmus test. It has gone purple when I expected pink and vice versa. And Im glad that you have made some good new friends along the way.

best wishes

R

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Thoughtful insights, thank you

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It is very different how long time it takes before we get a diagnose, a Specialist, some anticoagulation that works etc.

We have the same illness but we react very different to it as it is a curious and tricky illness that can change neurological symptoms and memories and how we behave, what we express with our words or not express at all. It can change our personality as we recall it was before APS.

It can be a very long way but we must never give up to try and finally with the right Specialist and the right drugs we can feel rather normal again.

I know you had a divorce just before the APS started. I remember it as I also left my husband just before my APS started. It has not made things more easy and i think you agree with me.

Too late to be awake now so I say Good Night to you and take good care and do not give up on yourself. It is a fight really that we must win.

Kerstin in Stockholm

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Thanks Kirstin for your kind, insightful and helpful words.

I started seeing a counsellor yesterday and I think it will help me find a way through the dark. As part of the assessment, she asked me what physical health conditions I had. Some time later her jaw seemed to be dropping, she looked like she had run out of space on the page, and the clocked had ticked some distance towards the end of the session. She then asked me if any diificult things had happend in my life in recent years, and she gave me a kind of look as if to say "please remember that there is a limited amount of space in this form". And so I went through losing my wife, work, home, health, hapiness and hope. And she looked a bit tearful (though I may have imagined it) and then said "seems like you have lost so much". At that point I felt my eyes well up and only just stopped myself bursting into tears. It seemd like she really understood, that I wasnt making a fuss about nothing, that most people would have found the last two years to be hell.

Once you know that your pain is normal and that people recognise it then it can kind of give you the motivation to go out and show waht you can do despite what fate has served up. So Im going to try and get on with the autoimmune report today and will contact the uni to work out ethics committee approval and stuff.

Thanks again Kirstin, you do a great job here on this site. take care.

R

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I think your decision in seeing a therapist is both courageous and right. It is neither a quick fix, nor an easy journey. Your therapist is right: it is about loss, many losses and your need to mourn them before you can move on.

I wish you well.

Ros

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Hi Ross

Just saw your message. Thanks for the kind words and good advice. Funny thing is that just as I started this private counselling, it looks like the NHS counselling might be about to come through. I guess I can only do one at a time and will have to postpone the NHS one. Though dont want to go to the back of what has been an 18 month queue. Maybe I can ask someone at the front to keep my place!

Mourning the loss is importnat I think. atm I keep going back in my mind to before the losses occured, as if someohow I can undo what happened. Like if I fret and regret enough I will power up some kind of time machine. Back and fourth driving myself to distraction. But Im hoping counselling will help me mourn and move on. Say good buy to the guy who could (just about and with a favourable wind) jump over a low hanging tennis net and hello to the one who can learn to play bowls.

Hope you are doing ok.

best wishes

R

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Unless you are very lucky, NHS counselling is very brief, sometimes 6-8 sessions. It's about trying to get as many people "counselling" but the downside is that it's too brief to be able to really deal with the issues. I speak as someone who has worked in the NHS.

It is not possible to have more than one therapy at a time as this would be detrimental to you. It is possible to defer it and if you want it it the future, you can reapply.

If you have found a therapist you feel will understand you and you feel able to work with the therapist, I recommend you continue. The relationship between you and the therapist is the most important part of the therapy itself.

It is important to understand that therapy is not a quick fix! Sadly, the NHS tries to do exactly that which means that the person's fundamental difficulties may not be addressed, because they have to spread too many people into NHS therapy.

You may think you know the problem (ie the illness) but as you discover and learn about yourself, you may find other aspects come to the fore, of which you are unaware.

Be kind to yourself. Look after yourself. Forgive yourself. No one's perfect! Nurture your relationships!

With good wishes,

Ros

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Hi Ross

Thanks for the good advice. You are a real gem Ross and great help to folk here I think.

tbh I think I need about 60 - 80 sessions atm! Since writing, another counselling thing has come through! RNIB telephone counselling. So I will get back and defer these and go with the hippyish woman in Swansea. Though might ask her to give the jossticks in the hall a miss.

She does seem very good. Also she has now got through what seems to be a compulsory potted history of therapy for new clients. My heart kind of sank at the first session when she said she would give "some background" and began with Freud and didnt seem to be in any hurry to get up to Reich! In the past I would have lapped it up and maybe asked lots of questions and got into a heated debate about whether Freud was a fraud. But anxiety has made me the world's worst audiance. I tried not to keep looking at the clock one minute and out the window at the sea the next as she went through discussion of the subcosncious and my conscious drifted off.

Thanks again. And I hope that you are as kind to yourself as you are to others here.

Kind regards

R

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I think that one of your attributes is a sense of humour, provided it is not used to divert attention away from what is most painful.

I am a psychoanalytic clinician! I don't think Freud was a "fraud" despite the very political attempts to turn him into one! Psychoanalysis didn't stop at Freud or even Reich!

My advice: don't intellectualise - because that is a defence against what is going on and yes, in your unconscious! Freud wrote about Jokes and Slips of the Tongue and I am sure you are capable to reading, understanding and debating, but as I said, this is understandably defensive to stop getting hurt.

All these "worries" are "normal" anxieties but I think you indicate you have already formed a relationship with which you can work. It will be this that will help you know yourself and work through that which you (and everyone) want to avoid ie pain.

Therapy is very hard work! Psychoanalytic psychotherapy takes time. You cannot rush it. It isn't formulaic. There's no homework or a manual. What you do is talk - don't censor yourself. Don't plan. Say whatever comes into your mind!

Thank you for your message.

Be well!

With good wishes,

Ros

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I agree with KellyinTexas- Its kinda hard to know what's 'normal' ageing and what to attribute to the disease. Sometimes I just can't find a word and get very frustrated but then some of my peers are just as bad!!

One thing I never do is stay with friends or relatives (the exception is one very dear friend I've known for nearly 40 years). Rather just suck it up and pay a hotel (although I know not all are in a position to do so) so I don't have to sit up making conversation when I'd really rather go to bed! I have probably become a bit more direct than younger days and finding how to say 'No' gracefully is something I've learnt to do.

As long as you don't get arrested I say it's all good and make the best of what you have.

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Thanks Ozchick. Your approach sounds pretty sensible to me.

as regards getting arrested, I'll keep the number of a good solicitor in my pocket just in case being grumpy becomes an offense in the UK.

bw R

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Mine certainly has.It has taken my two sisters to tell me thou which was upsetting. You don't hear how you speak yourself so to hear them say I am sharp and aggressive with it hurt.I don't mean to be but pain makes you snappy and you want to get your feelings out at times.I have to try and soften my voice which is hard as it's quite deep.I certainly don't have patience now and get so irritable.I join in conversation with friends and am ok too and very caring. Including my husband who is a gem looking after and putting up with me is three others friends and my eldest sister who are going on holiday for a fortnight next year together so I can't be all that bad.

I do think we change with an illness thou charlieab .I bet you are a really nice guy as you do come across here as one.Could do with your brains at a quiz night next week too.Mine went south along with the disease

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Im sorry that you went through that. What you refer to sounds familiar. Its natural to be snappier at times when ill i think. I remember speaking to a family member who thought that she would have managed fine with severe tinnitus. And then one day I remember talking to her with the television on in the back ground and she asked me to turn it down bcause she couldnt think with noise in the background. I just about resisted comparing this intolerance of a bit of noise for five minutes to her claim that she would be fine with multiple loud noises blasting in her head for the rest of her life

But great that you got your husband, family, and close friends onside. And I imagine that you are not "bad" at all. Hope holiday goes well. Sounds like you will need a small minibus.

Thanks. I use to love pub quizzes. We got banned from one since we kept winning! Im sure that must be against some international pub quizzing convention. Anyways, hope quiz goes well

best wishes

R

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I have experienced many of the things you posted charlieab. Some simple things I use to enjoy seem to annoy me now days. I know chronic pain has a lot to do with it and so does my wife of 39 years. She has been very understanding (several back surgeries). And I as well, have changed since 2012 when I started going downhill prior to dx.

Prior to extensive testing in speech pathology, I told them all my challenges like lack of thought process, loss of dictionary.. meanings.. and nailed the results to a tee.

I remember talking to my cousin who was 82 at the time and she was complimenting me on the phone ( I hadn't seen her in 15-18 years) and I apologized to her because my personality had changed and she really won't meet the real me (upcoming visit).

I can communicate so much better in writing than in words on the fly.

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Hi Hughes-comrade

Hope you doing ok today. Sounds like you have a real gem in your wife. Can make all the differnce I think.

I kind of feel that its not the real me too (hence my post) but when I met the old friends who I felt comfortable with, they said they couldnt see any difference since they last saw me (apart from some more grey hairs). Maybe we percieve more chnage than others notice.

kind regards

R

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After my diagnosis, I too noticed, in addition to the memory gaps -which did improve with time!- that I saw all things in my life through a different lens which complicated some, and eased other, interactions with people.

You know how sometimes you find that book, that poem, that sermon or news article which explains a lot by giving you a wider perspective on an issue? For me, that attitude adjustment came from the book “In the Kingdom of the Sick” by Laurie Edwards. Edwards attempts to lay out the differences in attitudes, values and behaviors which are forced upon those of us with a chronic illness. Those illness-acquired attitudes often do not synch with those who are not living under the command of the feudal Lords of Illnesses! I find it helps to see where “I am coming from” vs where “they are coming from.” I’m the same person, but I now live in the Kingdom of the Sick and I must adjust my lifestyle to appease my new jealous and unforgiving overlords!

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Hi Gina

Hope you're well.

Feudal lords of illnesses is a very graphic and apt way to put it I think. There is no 9 to 5 and weekends off. Its more like serfdom and servitude. And with not much prospect of a peasants revolt. Maybe accepting the servitude and working round it is the best approach. I guess Im at the stage of going over and over how I lost my freedom and whether it was my fault for wandering into parts of the wood I knew to be dangerous or should have known. Looking out for stinging nettles when a bl**** great ogre was standing behind me.

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And as a hiker your nettles metaphor certainly resonates with me. —there was that time when I was trying to avoid the nettles, so swayed to the left while walking over a steep, leafy covered hillside —and so lost my balance and fell down the hill into the Middle Fork of Williams River. Not hurt, but I was embarrassed. Of course, it was a hot day so being wet wasn't that bad.

Currently my most unforgiving overlord is the knee arthritis. I do not know yet if I have reached the knee replacement level, but I can not get back on the trail as-the knee will lock up with only about a half mile’s notice. And Im not going to subject my hike friends to the dillemna of wondering how to get me off the trail. And yet those same friends still try to book me as hike leader on our club schedule. “But I saw you walking at the mall. You weren't limping and you seemed fine. And that hike is just a short flat one.”

Sigh. Im off to Cleveland Clinic next week to get an opinion. I really want to get back to the trail. Now that the leaves are off the trees, that view from Endless Wall Trail in the New River Gorge is going to be even more fantastic. I feel like a spoiled brat, nut I want to get back on the trail!🚶‍♀️

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Hi Gina,

Have you ever painted in oil? I think you are painting in your mind (brain) what you see when you hike.

No snow where you live the next month?

Kerstin

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Since global warming, snow comes later and later - though with some variances. Im really bad at drawing or painting. But in case you couldnt tell, I’ll confess that writing is my big artistic passion. - though I do a decent job keeping up with interior house wall painting.

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