Cervical Spondylosis ruminations
Posted , 21 users are following.
Over the years, I've experienced varying confusing reactions, from friends, relatives etc. to my cs problem and I just thought I'd explore these positive / negative influences and try straighten my head out so I can have a nice Xmas!
The problem is this...I can't expect the average person to understand, or even empathise, with the confusing assortment of symptoms I try to explain to them in an effort to reach an understanding of the limitations of my interaction with them, whether that be organising a social event, or just trying to focus and engage verbally. I have developed a disgusting patronising habit of pretending I'm interested when I'm really only concerned with the ache in my neck. Obviously, with c/s, there's a time to socialise and a time not to, and due to the unpredictability of the condition, this can get confusing and even lead to uncalled for bad reactions, again leading to resentment, anger etc. Nothing wrong with resentment and anger as long as they are not the demented children of misunderstandings!
I don't know if anyone else with c/s feels like this. In this post I'm going to try and unravel the conundrum and evolve a positive attitude, as a Xmas present to myself.
Firstly, I know it's not right to dismiss other's opinions just because I'm aware they can't grasp a complex problem of understanding...that would be patronising. Also, although I am aware of my aches / pains twenty-four-seven, I can't really expect a sympathetic ear whenever I feel like whingeing ( though it would be nice!). A lack of tolerance in this department is the norm. So, what am I left with. I must make the intellectual effort to find some middle ground that works for both, but most importantly, works for me, as I am the one who must go through this process to counteract the social stigma of rationally discussing chronic
ailments.
I will return and add to this later (must go out now). would appreciate any comments... eg \"Stop while your'e ahead\".
2 likes, 261 replies
Gerry_the_neck
Posted
I think you should press your Gp to refer you to physiotherapy and take it from there. The symptoms can be varied and confusing and it's probably best to stay focused in requiring the best assistance they can offer. Good luck.
Gerry_the_neck
Posted
This one is going to dig deeper, closer to the bone, and may cast a haunted shadow over my social life...but, in for a penny, in for a pound. Consider it a necessary process of investigation, but maybe at a cost.
I come from a large family...8 siblings (sounds like a dirty word!)..let's say brothers and sisters. We've all had our ups and downs and we all manage to cope reasonably independantly. There is a general prevalent sense of \" don't upset the apple cart unless there's good reason\" That's fine, and, under normal or extreme circumstances, works well. However, within this, I suspect there is an ingrained culture of dismissal of any problems which might not comfortably fit into accepted patterns of understanding. I do know that they all do their best by their understanding but, basically, if you don't have a Big Certificate to say thet you are really exceeding yourself in very trying circumstances, then you are very likely to end up with the sign of the hypochondriac burned into your forehead. I'm not having a go (this might help with any recriminations! )....just trying to tell it like it is, to me at least. Each has their own level of readiness to accept or not....and who am I to judge, anyway. I realise, probably more than anyone, that an air of optimism must be maintained, and I fully support that. Unfortunately, that air of optimism quite often teethers on the edge of denial, semi denial, quasi denial or even just a desire to not accept that which is not patently obvious and unavoidable.
Optimism doesn't really work it's magic unless it is grounded in facts, i.e. the problem must be recognised and respected first before the optimism is recruited as an aid in managing the problem. It shouldn't be used as an excuse to avoid understanding. It's a bit like the common usage of the many \" get well soon\" cliches which, whilst actually, in good faith, encouraging a quick recovery, can also be a little insulting or hurtfull to someone who is aware they have a chronic, degenerative condition. C/S , in this instance, is in a grey area and not always apparent to everyone as a chronic problem...thus the accepted inappropriate use of irrelevant cliches. Ok. We forgive them......continually!
There must be something in our DNA which stops us from conceptualising other peoples chronic illnesses. Maybe a hint of fatalism that conflicts with our culture of optimism. Ne'er the twain shall meet. This is obviously a problem for those suffering a chronic illness and trying not to feel isolated in society, at the same time. Unfortunately, the illness is your default setting, there is no escaping it, and yet you must tread so carefully when expressing that , so as not to offend the sensibilities of the easily offended optimists....That felt good!
I sometimes wonder if this society has flipped it's priorities to suit those who can't handle a bit of reality. Let the people in white coats, who get paid to do it, deal with anything which might depress our unreal fantasies of immortality. We're definitely going soft, big time. And, in case anyone thinks this is just another embittered rant....I don't exclude myself!
PS I saw the consultant at UCLH yesterday and I need to get another MRI scan and some nerve and muscle tests to determine exactly which vertebrae will need surgery, which seems the only option. I'm still quite happy with how I'm being treated, despite all the waiting, and I'll post any developments
Gerry
HC58
Posted
Good luck with the forthcoming tests and then if all goes well with the op perhaps you 'will be better tomorrow'!!
HC
X
Gerry_the_neck
Posted
Gerry
chris215a
Posted
Aunty_Em
Posted
Long time since I passed this way, hope everyone is ok? Or as ok as you feel at this moment in time, that's how CS affects us, doesn't it? :cry:
Gerry me boy, sounds like things have detiriorated somewhat over the past 12 months or so?? :cry: Keep batting and battling, don't let the bugger win!
Rumminations are as interesting as ever :D
Hiya Chris, did you get back to the neuro? Any news from Jassy?
Take Care
Emxx :D
adrian18
Posted
Yu seem to be battling on. I am having problems some days with my balance.
Plus I have had a stuffed up nose for weeks, cant get rid of it. Have u any advice ??
Keep on trucking
Tony
chris215a
Posted
Gerry_the_neck
Posted
Beginning of new rant...take extra pills if required!
I tend to think of 'denial' in the same way I see the Theory of Archimedes...i.e. \" The volume of dysfunctionalism created is equal to the weight of the problem that created it \" Nothing wrong with a bit of denial if it helps us avoid being constantly reminded of our shortcomings. Also, anyone who has made mistakes ( and this includes everyone ) must have a defense mechanism which helps propel them forward. Otherwise, they get stuck in 'regret' mode.
The thing about denial is that it should never be exposed or betrayed (have I just done that? ). Simply because that would open the door to revisiting the original problem and defeat the purpose of inventing the denial in the first place. There are rules of denial acceptance (ask any Liverpool fan this season! ) and , except where serious differences occur, there is usually no need to open the proverbial can of worms. In a way, a lot of communication is about assessing another person's levels of denial and the game is to try and stay one step ahead, not expose your own denials, and avoid embarrassing full disclosures. Sorry about lifting the lid on that one!
The rules of 'denial' seem to allow for the transferance of the amount of denial necessary to help obscure that which must be denied. Where there is doubt or disbelief, people will swap denial remedies to help each other from having to face complicated realities. This is where denial exceeds itself and becomes a judgemental critic. It has entered territory where it doesn't belong. To protect our denial we elevate it from the Dock to the Judges Bench and thus confer on it an badge of decency. Now the denial is the judge.
All this theorising impacts on what I'm really getting to, which is the manner in which most people, even the white coats ( apparently pale green nowadays ) relate to having a chronic illness with confusing symptoms described to them. They are probably forced to think, as I think I would be, that such an array of symptoms sounds a bit suspect and maybe even feel that they are being used or even that their professionalism is being abused. Whatever. This usually leads into a contraction into a protective denial mode....only natural, but a bit of a blockage in terms of actually dealing with or empathising with the problem, which, believe it or not, was accurately described. In both the social and professional arenas, this is the point where things can break down and the futility set in. It is also the point where I usually feel I must start compensating to ensure it doesn't fall apart completley.
Basically, what I'm trying to say, I think, is that a typical description of c/s symptoms will inevitably force the listener into a protective denial mode and, trying to compensate for this with watered-down descriptions only helps the listener, not the sufferer. Taken further, this could easily escalate to the point of declaring there is no problem, at all, and we just accept their denial mode has won the day! I'm getting cynical, again. The quest for me is to debunk these issues, invent some appropriate cliches that actually work in our favour and hopefully re-establish some sense of trust.
Luckily, my wanderings are merely cerebral, and, strangely, on a more positive note, a little bit of attitude makes a good pain distractor.Still can't see how it can possibly help some one else's headache....maybe if you double the dose before reading this !!
I've got another rant prepared, but
Flutterbye
Posted
I really missed you when you went AWOL....Which is where i have been lately too!! :wink:
Hiya Chris and Aunty Em too.... :hug:
I wont hijack your thread with my stuff... :sorry: I will do a seperate update on my CS surgery journey....
Take care of you ....Jassy..xx.. :fairy:
Gerry_the_neck
Posted
Long time. Nice to see you back on the old rummies. I've been keeping an eye out for your reports, post op, as it looks like I might be undergoing similar processes soon. I think we both belong to a similar headachy / arms / hand sub-group...so please please post here at will. Just ignore my feeble attemps at indignation at having my treads interrupted...your'e probably doing me a favour!
Latest rant (might surprise some )
Well. I.ve now informed my nearest and dearest (friends and family) of recent medical reports and prospects. What can I say !Forget everything I've ever ranted about, whilst I wallow in the empathy. I'm not being cynical. I guess everyone just needs the professionally accredited facts before releasing their real feelings, and, with my new found feeling of post acceptance euphoria, I'm happy to say that any support is good support. Probably best to control my sense of vindication here, lest the whole experience becomes a bitter-sweet one.! It does seem a bit like it took bad news to create good news, and if that's how it's gotta be...so be it.
Got me thinking about my long c/s history, and how it has affected and changed my overview, in it's own peculiar way. When I was first diagnosed, 30 years ago, I was like anyone else. I put my faith in and expected the professionals to do their best for me, in the same way my customers would expect me to do a good decorating job and use my savvy to their advantage. Through various disappointments I obviously got a bit, justifyably, concerned and maybe turned my attention to seeking some understanding from friends etc., in direct relation to the amount I felt I was being ignored by the professionals. Unfortunately, a lot of what I encountered is the stuff my rants are made of. Having said that, some responses were good, this site for instance, but it always felt somewhat too few and too far between.
Also, I've been in relationships (can't have been too easy for them, either) where I felt no need, or little need, to confront the social issues, as I always had the option of returning to a safe haven. That was fine (I won't mention the other irrelevant problems !). No need to confront issues that could be comfortably avoided. I'm pretty sure that if I'd had kids, as well, I wouldn't have been interested in exploring some of the stuff I've let my mind wander over, aimlessly at times, and I think it's a compliment to anyone who has read some of these rants that I haven't had a \" What's your effing problem\" thrown back at me ocassionally. I know your'e thinking it, but, until you put it in print, I actually find it quite easy to deny that one !! ( again, seamless linking to my last post ). However, since adopting the 'Single' lifestyle, I find my thoughts do hover on the social dilemmas we face and, if nothing else, the rants might help unravel the puzzles for anyone experiencing similar stuff. As long as they don't become a puzzle themselves!
At the moment, although I'm shortly going to have to make some serious decisions, as others here have already done, I feel fairly OK about the way things have levelled out. In a nutshell, I went for a drink with a mate last night (just 2 pints of dark matter), who I hadn't seen for 3+ months, and although I was a bit apprehensive that my recent reports might conflict with his previously held perceptions of my c/s, I was surprised at how easily he overcame all this and put my concerns to rest. It wasn't long before we were browsing over my MRI scan images, which I have copied to my digital camera as incontravertable (again the link with vertabrae !) mobile evidence of my sincerity. The \" Gruesome Twosome \" eh? It's reassuring.
ps...This, by no means, means there'll be no more rants!
Gerry
Aunty_Em
Posted
I don't know what to suggest for you stuffed up nose,apart from the usual sinex sprays, inhilation with olbas oil etc. Balance is a real factor with CS isn.t it? Thank fully all that has stopped for me now, apart from having vertigo for which I use travel bands which seem to help............honestly, you might want to try them for you balance problems.. who knows????
Gerry,
You should be ok at the ION QS, I.m pretty familliar with the place, never been but the charity I was involved with work very closely with the Headache Group there ( Hubby has clusterheadaches)
I think the rumminations thread is a good outlet for you, and for us, not everyone has the same feelings, but it's good to see other opinions and reasoning with this condition, and perhaps it also gives us a better chance to know the person behind the pain.
Orft to cause more bother now
Take Care
Emxx :wink:
Flutterbye
Posted
I really can empathise with you about the way our families deal with our pain and having CS.... Even when i was in Hospital and Rehab afterwards for 5 weeks, only half my family bothered to visit me or even call to see how my surgery went!!! I was very upset by this...I have 4 brothers and only 1 of them phoned me in Rehab to see how i was. (and i think my mother had a stern word with him to make him call me :roll: ) On the flips side though, My sister and her 2 year old daughter came frequently and my niece Jasmine charmed and lifted the spirits of every one she saw!!!! :love: Including me!!
These days, I have decided to focus my attention on the people that matter to me and those that have empathy and compassion...not only for me, but for everyone.....those are the people I choose to spend my time with!!!
Anyway...sorry for taking up your 'rant space'.... :wink:
Love reading you perspective of things as always....
Take care...Love Jassy..xx.. :fairy:
Gerry_the_neck
Posted
Just a quickie. Don't know if you spotted this one yet but it might or might not be useful for your hubby. I know nothing about cluster headaches and this might be another blind alley!
Gerry
7103 Post Posted by : Richard B Guest
Post date: Sun Mar 21, 2010 4:34 pm
Post subject: Treating Cluster Headache Report this experience Reply with quote AddThis Social Bookmark Button
I experienced my first cluster headache when I was about 21 years old. I am now 54 and have had cluster headaches on and off up until my early 50's. They would arrive at any time, but mostly at night. The pain was so intense that on a few occasions I was suicidal. Many GPs tried to help me with a multitude of various drugs, yes even morphine but unfortunately none of them rid me of these awful headaches. The most painful seem to start a short time after either starting a new job or following a move to a new home. Here's the best bit. Four years ago after just moving into my present home the cluster headaches started. I visited my new GP who was extremely supportive but when she suggested trying breathing oxygen, I must admit that I really didn't think it would work. How very wrong was I, because I tried breathing oxygen using a mask supplied with the cylinder at about 01.00 am and within minutes I realised the pain began to ease. After about 12 minutes the pain had completely gone. This treatment did not stop cluster headaches from starting, but it did on every occasion clear the pain within a very short time. The good news is that since those attacks in 2006 I have had no more cluster headaches. It was amazing when I think that all those prescribed drugs did nothing, but something simply like oxygen worked! The reason why I felt the need to write this was because I know the extreme pain these headaches cause and if I am able to assist any other sufferers, then it can only be good.
Gerry_the_neck
Posted
I think you're so right to reserve your energy for those that deserve it. It's probably easier to focus on the negative reactions, but it's going nowhere unless it's challenged on the bigger social scale... not everyone's idea of how to best utilise their re-hab time. Hope the recovery is going as good as can be expected, it seems it's different for different people and probably difficult to assess if all is according to plan. Even more difficult when the plan itself doesn't define specific accurate expectations, Seems, from what I've browsed on the Web, that a bit of self assessment is the best way to assess the benefits and recovery time. Forgive my ignorance here, but the best I can do for a comparison here is whenever I've had to buy a 'new' secondhand car. For the first couple of weeks, I'm so sensitised to the fact that I might have bought a dud, I imagine everything malfunctioning. Until it all settles down and my mind is relaxed enough to accept I might have got a bargain....that is, until the next breakdown! I might have surpassed my own ignorance in even assuming that might be a reasonable comparison....just tell me off if I'm outta line.
So, to the next rant:
Everyone aspires to being included in a society which guarantees us dignity and respect, whatever our circumstances. This, I believe, is an innate desire. Two hundred years ago it was typical for a person with an unidentifyable chronic condition to be hauled off to a sanitorium, there to languish out of earshot of the general public. Society has gradually become more enlightened in how it treats what it doesn't understand, but there is still room for improvement and probably always will be. Nowadays the disaffected languish in their own homes and make ocassional visits to the doctor. Ok, it's maybe a bit better than that...but not much.
The rules of inclusion in 'normal' society state that we keep the whingeing to a minimum and always try to look on the bright side....as though the eurphoric state of those not bothered by a health issue must not be disturbed. I see this as a survival of the fittest thing in that the strongest, most able, have created a culture which suits their values and anything which impacts on that negatively, should be dealt with,almost secretly, in hushed tones, and must never be allowed to become standard practice. In order to facilitate a more inclusive balance, society pledges to protect the weak, as best it can, but in doing so, it relegates them to a paralell existence, both for their own good and for it's good.Seemingly.
It's not difficult to see that anyone, thus relegated, would not feel this exclusion to some extent, and in an effort to re-establish some parity, might resort to trying to prove themselves more deserving by making a big noise....witness the efforts of people like Stephen Hawkins or Ian Drury. It has taken the efforts of such icons to dispel the notion that the world would have been better had they been side lined and not allowed to express themselves. I still sense condescension and patronisation whenever I hear a media report on either of them. It's almost as though 'normal ' society has been relieved of it's guilt burden for previous injustices against the disabled, by allowing both of them to achieve the highest regard in society. There is nearly always a referance to them over-achieving despite their circumstances. How patronising is that, and usually said by a news reader whose only claim to fame is that they can read and relate from an autocue (also known as an idiot board) on demand. Brilliant.! At least this rant has made me realise why I don't spend too much time watching the news.
A positive flip side to this is that we should be aware that society does have a guilty secret in it's own awareness of how it treats it's weaker participants, and this can be nibbled away at gradually, hopefully achieving a greater parity. Why should I waste my time bemoan