Breathing New Life into an Old Dog

This, I am afraid, is a long one!

It is easy to be tempted to jump at every solution or diagnosis doctors or patients throw at you when you are very ill. However, it is also just as easy to assume that whatever diagnosis or solution thrown at you is wrong.

As those who regularly read my blog know, just under a month ago I received a re-diagnosis from M.E. to Dysfunctional Breathing Syndrome with secondary Fibromyalgia. When I released this information to the world, it was met with a mix of hope without fear of potential disappointment and dire warnings of the dangers of believing a word of what the doctor had told me. Some were absolutely sure that this meant that very shortly I would be 100% well. The other side thoroughly believed that the treatment I would now receive was going to doom me to rapidly worsening ill-health if not permanent disability.

I had to find myself somewhere in the middle. Not willing to accept that this now meant there was hope of 100% recovery but equally not willing to believe that a specialist with many years of experience could be completely wrong. Over the last month, I have wafted from total belief in my recovery to total disbelief. Now, I believe I find myself in the sweet spot: determined to do what I can to improve my health but keeping a wary eye out for danger signs that might lead to the doomsday scenario suggested by some of my readers. Accepting this opens you to both hope and disappointment, often at the same time.

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After my last blog, I was contacted by somebody from Phoenix Rising – a respected M.E. forum and advocator for M.E. patients’ rights. They asked me if I would continue to blog my experiences, as patients needed to know whether there were other potential treatment options out there and what might happen if they too traversed my current road. There is no question in my mind of the importance of doing this.

When I was very ill, the very lack of positive stories: the stories of those that had made significant steps towards recovery or even complete recovery, made it very hard to keep a grasp on hope. Those who blog or post on forums tend to be those who are still very ill, many of whom will have been ill for decades.

Those who recover understandably tend to move on and do not leave behind the story of how they got there. While my story may not be a story of total recovery (yet), at the very least it is now a story about how improved health can happen quickly under the right circumstances. I plan to continue blogging into what I now hope will be full health and indeed beyond. I hope I can find a way to provide just a little bit of hope to those that might need it.

My health has improved significantly over the last number of weeks. It has improved at a rate that has surprised and shocked me. The changes have been incredible.

My parents, husband and many others have told me how my voice has changed, that I’m beginning to sound like the old bubbly Karen they once knew. I can hear that in myself. I can feel that less energy is needed simply for the process of conversing with somebody.

A day tires me out but rarely does it fatigue me. Until I became ill, I would never have been able to define the difference between fatigue and tiredness. The difference is stark. Tiredness can be dealt with by sleep, fatigue remains largely unaffected by sleep, no matter how many hours you lie there.

I have discovered a new problem – although I must still pace and rest regularly, my day is now so filled with walking, yoga, swimming, driving and socialising that I struggle to find time to do the things that filled my day when I was just too ill to leave the house. Things I learnt to enjoy – writing being a primary example. While previously I would spend at least 2 hours a day writing, now I struggle to fit in more than that a week. It is regularly planned into my day but just as regularly is planned out by an unexpected request from a friend to meet for lunch or the fact that it is a sunny day and I want to do a little gardening. My life is now fuller, while not yet normal certainly on the road to normality.

So how has all this come about? In reality, I am not 100% sure. Perhaps, this would have happened anyhow without re-diagnosis. Perhaps, re-diagnosis has given me the freedom to allow myself to get better. Perhaps, it is that I actually do have a breathing issue and dealing with it is helping. I do not know. Although knowing me, I think I can be certain that it is not that I now feel free to get better.

As soon as I returned home from the Rheumatologist I started to research a) what Dysfunctional Breathing Syndrome was and b) how did I start to do something about it. Becoming aware of how a normal person breathes and how many rough breaths per minute they should take, made me more aware of how I was not breathing correctly and how I was breathing far too often a minute.

Since then I regularly stop myself, assess how I am breathing and if I am not doing it correctly – correct it. Practice again breathing properly for a minute or two then get back to my life. Even prior to my first appointment with a physio about ten days after re-diagnosis, I began to feel more energetic, more clear headed. Again, was that purely psychosomatic? Possibly, but I am beginning to reach the conclusion that it was not.

I am not a doctor or even somebody with a medical background, please forgive therefore the very layman understanding of what is going on with my health. Some of the precise details below may be somewhat inaccurate but the overall meaning should be right. 

Not as often as previously but still at times, I find myself upper chest breathing. These are very shallow breaths that don’t involve the use of your intercostal-diaphramatic muscles.

Click on the link to see how I should be breathing!

https://www.youtube.com/watch?feature=player_embedded&v=wS7CA2aRPYI

This means that my lungs were rarely if ever filled correctly. In order therefore to get enough oxygen, I had to breathe more often to compensate for the low level of air I inhaled each time.

This however still meant that my body didn’t have enough time to utilise the carbon dioxide in my breath in order to transfer oxygen to my haemoglobin. This therefore carried the problem around my body in my bloodstream: messing up the chemical levels in my body and causing too little of one chemical and too much (such as lactic acid) of another. All told therefore some if not all of my symptoms may to a greater or lesser degree be affected by my shallow upper chest breathing.

The instant benefit of a re-diagnosis was that Dysfunctional Breathing Syndrome is covered by our private medical insurance while M.E. (because it is chronic) is not. This meant that referrals came fast. Where my first NHS physiotherapy appointment is scheduled for October 15th, I have already had 5 physio appointments privately. Additionally, I have also seen a chest specialist – who also diagnosed Dysfunctional Breathing Syndrome although he refused to rule out the possibility that M.E. may also be playing its own role in my ill-health. Interestingly, he used to be an M.E. specialist.

The first thing I have had to learn to do is count my breathing. Try saying Bombay Sapphire Gin (my favourite type of gin for those looking for presents for me). Inhale for Bom-bay, exhale for Sapph-i-re, rest for Gin. i.e. count two seconds for inhalation, three seconds for exhalation and briefly relax my stomach before inhaling again. I was told when I was actively practicing this technique, to lie down flat with my head supported and place one hand on my upper chest (above the breast bone) and the other just below the breast bone. I need to practice feeling my lower hand raise as my chest expands on inhalation and while there will still be movement, the upper hand should not move as much. If it moves more, than I am upper chest inhaling.

Initially, practicing this made me realise that instinctively I was moving my stomach in for inhalation and out for exhalation. Clearly, ridiculous. How can I expand my lungs if I was actively reducing their space for expansion? Equally, how could I expel enough air from my lungs if I was actively expanding my stomach and therefore not using my diaphragm? The diaphragm being the balloon like muscle under your stomach that pushes the air out of your lungs during exhalation by reducing the space your lungs can occupy.

Diaphragm:

diaphragm

Also, I wasn’t using my intercostal muscles (the muscles that help your chest to expand and contract. This therefore made it even harder to get enough air into my lungs and further to expel the air properly.

By concentrating on trying, in simple terms, to use the whole of my chest (especially the lower chest) to breath allowed me to inhale more air and importantly give the oxygen and carbon dioxide enough time to do what they needed to do before I expel the waste carbon dioxide.

So now, I find myself during as many TV adverts as I can, practicing my breathing. If you could hear my mind as I walk down the street, you would hear, ‘Bom-bay Sapph-i-re Gin, Bom-bay Sapph-i-re Gin’ on constant repeat.

Numerically, the consequence of being so very aware of my breathing has slowed my breathing down. As soon as you try, of course, to count how many breaths per minute you take you subconsciously breathe either faster or slower. However, bearing this in mind, the day I was diagnosed with Dysfunctional Breathing Syndrome I tested myself and found my rate about 25 breathes per minute – today 13. Pretty much normal. This is perhaps not the most accurate way of testing my breathing rate but for a home method it will have to do.

There is no question therefore in my mind, whether or not I really have this Dysfunctional Breathing Syndrome, that actively trying to breathe in a better and slower way must have improved my health. Whether it will provide a long-term cure is yet to be seen.

A friend of mine who is a long-time recovered alcoholic made this analogy for me. Stopping drinking does not solve the problems that caused you to drink in the first place. It does however provide you with the opportunity once the symptoms caused by drinking are reduced, to try and deal with the initial reasons that caused you to drink in the first place.

You won’t be able to deal with these causes all at once but step by step you can deal with the most important ones. That doesn’t mean you will ever deal with all your issues completely but it does at least alleviate the worst of them. Continuing not to drink however is one of the only ways you can stop yourself from exacerbating these symptoms again.

I see the same with me. Breathing badly whether it is an illness by itself or just a symptom was making my health worse. If breathing correctly allows me to reduce if not eliminate some of my symptoms, then it simply makes it easier to deal with the remaining now more isolated symptoms. If, however, I forget to breathe properly again, then this will inevitably bring back some if not all of my symptoms. awkward-breathing-funny-moment-Favim.com-1741341

There may be several reasons why I experience fatigue and several reasons why I feel pain and stiffness but if breathing properly reduces or eliminates some or all of these, then that allows me to get more out of life. To do more without risking damaging my health. To begin to start to get fit and recognise that there is a difference between the ‘M.E.’ lactic acid ache of muscles and the ‘I’m using muscles I haven’t used for a long time’ lactic acid ache.

So today, I look at my achievements of the week and I’m very grateful for and proud of all I have achieved. I have learnt to know my body over the last year and I know that I have not damaged my body further by becoming more active. This week I have: swam 30 lengths of a 50 metre pool; I have driven for 1 hour and 40 minutes; I have walked 9.2 miles; I have done full body stretches everyday holding each stretch for 19 seconds; and I have done 90 minutes of yoga. In March (6 months ago) an average week consisted of walking only 2.25 miles with no yoga, no swimming, no driving and no stretching. Out of the last seven days I have socialised with friends 6 times, each time for at least 2 hours. The days back in March where I had to rest all day and go to bed immediately on return just so I could spend 40 minutes with friends seem a long time ago.

It is clear therefore that over the last month I have seen my activity and my health improve by at least 20% if not 30%. If it is coincidental then so be it; if it is psychosomatic so be it; if it is because my breathing is better so be it. I’m not sure what has caused this improvement in my health but I will continue to do what I currently am because something is working and to use the old saying, ‘if it ain’t broke, don’t fix it.’

 

Thank you to everyone who has read my blog. Today’s blog sees What Will Happen to M.E.? reach 10,000 views from almost 80 different countries. Amazing. 

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Doctor, Where Art Thou?

I started my last blog with the following lines:

It had seemed for some time now that I had been abandoned by all and sundry from the medical profession. My pain consultant told me he didn’t need to see me again. My physiotherapist told me there was no point seeing him again. Occupational health had said it was lovely to meet me and she hoped all would go well. Even my doctor had given out to me for making an appointment to see her instead of getting my prescriptions renewed through reception. All I was left with was my wonderful support worker, Sue, who for personal reasons hasn’t been in contact now for at least two months. It seems as if the medical profession were more than happy to dispose of me despite the fact that my health was far from healthy. It seemed that it was rather up to me to work out (or rather continue to work out) how to handle having M.E. My future was uncertain but it was certain that the medical profession had had enough of me. A very lonely and frightening reality. 

I had felt that there was nobody left out there to help me. That even if there was, my access to them would now be restricted by medical professionals who no longer saw a reason to help and support me. 

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For a long time my doctor was very supportive of me, happy to listen to my concerns and make any necessary referrals. That time however, it seemed, had passed. My physiotherapist, not able to do traditional physio with me as he didn’t think my body could cope with it – had said goodbye. I had already done the job of both the Occupational Therapist and the Clinical Psychologist by quickly developing a good understanding of my illness and how to cope both practically, physically and emotionally. 

It had begun to seem to me that if I had somehow been a less perfect patient, then they may indeed have seen a role for me in their lives. They could teach me how to get better. When that opportunity disappeared, there was no longer a role for me with them. 

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It is quite frightening, frustrating, aggravating and infuriating now to think that without my best friend’s friend, I could have remained ill for a very long time if not the rest of my life. Let us assume that the diagnosis my Rheumatologist made (that was referred to in my last blog) is the correct diagnosis. I have Dysfunctional Breathing Syndrome with secondary Fibromyalgia and not M.E. Yes, there is some concern over whether this is actually a correct diagnosis but for the moment let’s just assume it is. Assuming that it is, if it wasn’t for my best friend’s friend, this diagnosis would never have been made. 

The reaching of this diagnosis had little if anything to actually do with my GP or indeed any of the primary medical professionals associated with my case. From the beginning, my doctor had seemed incapable of pointing me in the right direction for further medical support. All referrals made were based on my request, based on my own research. 

My best friend, Sarah, has been very close friends from childhood with a wonderful nurse called Helen. Sarah, upon reading one of my blogs many months ago, discussed my case with Helen. Helen works for a pain clinic in London. Helen advised Sarah, to advise me to try and get a pain clinic appointment. She said she had seen many M.E. patients and it sounded like my symptoms fitted right in with what herself and the consultants she works with come across regularly. 

On being referred to an M.E. specialist (he turned out to be an Infectious Disease specialist) who wanted little to do with me, I managed to convince him to at least include in his letter to my doctor that a referral to a pain clinic might be beneficial. He refused however to make the referral himself. 

Luckily, my doctor upon receiving the letter did not object to the referral. I have previously written about how great the Pain Consultant, Dr Antrebus from Warwick Hospital was. He was the first medical professional to actively listen to my story and offer me genuine advice. He also referred me to the Rheumatologist though with no conviction that he would do anything other than confirm his diagnosis of M.E. 

Again, let us imagine that the Rheumatologist is correct in his diagnosis of Dysfunctional Breathing Syndrome with secondary Fibromyalgia. Imagine therefore that Sarah did not meet with Helen soon after reading my blog or imagine that they did meet soon after but they had more important things to talk about. What might have happened to me?

All the medical professionals in my life had given up on me, wanting no more to do with me.  I am left only with the shocking realisation that assuming this new diagnosis is correct, I may never have gotten better because the medical profession no longer knew or cared enough to keep trying to support me and look for new treatments. 

Perhaps this is understandable given they are guided by the NICE (National Institute for Clinical Excellence) guidelines. M.E. guidelines, that modern research have proven to be on the whole inaccurate if not downright dangerous. If NICE however are refusing to revisit the guidelines for at least a further ten years, why should GPs and specialists think outside of the box when looking to treat a patient with an utterly life changing illness? It is perhaps understandable then that faced with a patient with an illness they rarely come across, they wouldn’t want to do extra research to ensure that their diagnosis and treatment suggestions were correct. Perhaps they feel there is no need to ensure that their diagnosis is correct and that there are no further underlying conditions. 

To think that the very symptom that makes my Rheumatologist thinks more than anything else that I have this new diagnosis: my breathing –  is the very symptom that my GP falsely insisted for the last 10 months was a panic attack. It frustrated me greatly that no matter what I did or said she was sure I struggled with my breathing because I was having a panic attack. Five minute GP appointments are of course the norm and perhaps faced with a patient struggling to breathe but with a clear lung x-ray (after my very first appointment) then it must be a panic attack. I can’t help but feel that if she had even once decided to query my breathing issues and hadn’t just dismissed me as a panicked then perhaps I would have been healthy months ago.

 

f7f783135e89662f_cartoon_fitness_lady.xxlargeI am allowed imagine that this is what I normally look like when healthy!

Again, let’s assume the new diagnosis is correct. Within 6 – 12 weeks of receiving specialist Respiratory Physiotherapy, I should be completely back to normal – incredibly unfit but normal. I reached crisis point November 17th, 2013. If my doctor had queried my breathing issues then, I could have seen a respiratory consultant and had physio within a week or two of that date (with my private health insurance). Let’s just assume that I took 12 weeks to return to complete normality – then I would have had my life back by mid-February at the latest, possibly even by the end of December. 

Instead of this, I have not worked since November 17th and have been on half-pay since mid-May with no pay at all due November 17th next. My illness has not just been an emotional and physical drain on myself, my husband and our families but also a financial drain. In addition, my school has not had a Head of English since November last and have had to pay temporary staff to cover my teaching hours while I was on sick leave. At times my boss has let it slip (unintentionally), that this has put a considerable strain on the finances of a school, which (like all other schools) despite claims of ring-fenced educational funding, has had its budget dramatically cut. 

Surveys suggest that roughly at least 25% of all M.E. patients are misdiagnosed. Surveys also suggest that those with M.E. diagnoses tend to be high achievers. With 250,000 current M.E. diagnoses in the UK, then it is possible that up to 63,000 of these are incorrect. That is 63,000 people – the size of Maidenhead or more than half the size of Colchester whose lives are permanently on hold because they have an incorrect diagnosis. 

How much are these people worth to the UK economy? 

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If we assume that at least half of these people (31,000) are on the most basic benefits, then this could easily amount to £3360 per person per year. This is a total benefit spend of £104,160,000 a year. This is of course a figure that ignores whether they live in council housing or are on a higher rate of benefit. Now these people aren’t an example of benefit scroungers, people who could work but choose not to. These are people whose ill heath has disabled them to the extent that they can no longer work. 

Imagine then that half of these 31,500 people who are on benefits, have actually got an illness that is curable then that potentially is a saving of £52,080,000 a year. 

Again, this does not include any savings made by the NHS for no longer having to, at the very least, subsidise their prescriptions. Myself, I am on medication which should cost me just over £32 a month which is further subsidised through a pre-payment system to less than £10. Assuming once again that these 31,500 who are potentially curable are also on the pre-payment system then this is a cost of £693,000 to the NHS per year. This of course does not reflect the true cost of patients’ medications. 

Ignore the financial costs and simply considerable the cost to this nation of the potential removal of 63,000 high achievers from the world. I am a damn good teacher: anything less than Outstanding lesson observations are shocking for me and highly unusual. Twice departments I have run have been considered Outstanding by Ofsted and my personal contribution to this status was on both occasions recognised as key. My potential permanent removal from the education system through a misdiagnosis not only would have a negative impact on my life and the lives of those I love but on the children I have not taught all year and all the future children I would not have taught. I am but one contributor to the greater benefit of society. There are at least 62,999 other M.E. patients who too may not be contributing what they should because of misdiagnosis. 

It is for this reason that I am frightened, frustrated, aggravated and infuriated by the concept that if it wasn’t for my best friend happening to know a pain clinic nurse and they happening to have a conversation about me and her friend happening to mention that I might find a pain clinic useful, that I might have never gotten well. I might have lived forever within the bubble world of M.E. Slowly making progress and getting some of my life back but never quite understanding why those final steps towards full health were unachievable. 

It is or this reason that I am frightened, frustrated, aggravated and infuriated by the concept that there may well be 62,999 more patients out there who may not have had the luck that I have had; they may not have had the knowledge that I was capable of gaining; and they may not have had the emotional support that I had from family and friends to keep on fighting. 

How many lives are on hold because the medical profession is sick of us and don’t know where to go next? How many of us may never see a proper diagnosis because we are considered malingerers, panickers or annoying or some other form of medical neglect. 

My husband has said time and time again that such anger is pointless – it will not change my past and it will not change my future. He says that there is no point fixating on the potential that if it wasn’t for luck I may never have been re-diagnosed (assuming of course my current diagnosis is correct). He is absolutely correct of course. Doesn’t stop it being a frightening, frustrating, aggravating and infuriating thought. 

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You Can’t Be Serious?! Really!?

Well now, that was unexpected.

It had seemed for some time now that I had been abandoned by all and sundry from the medical professional. My pain consultant told me he didn’t need to see me again. My physiotherapist told me there was no point seeing him again. Occupational health had said it was lovely to meet me and she hoped all would go well. Even my doctor had given out to me for making an appointment to see her instead of getting my prescriptions renewed through reception. All I was left with was my wonderful support worker, Sue, who for personal reasons hasn’t been in contact now for at least two months. It seems as if the medical profession were more than happy to dispose of me despite the fact that my health was far from healthy. It seemed that it was rather up to me to work out (or rather continue to work out) how to handle having M.E. My future was uncertain but it was certain that the medical profession had had enough of me. A very lonely and frightening reality.

not-interested

My pain consultant had made two referrals, really in his own words just to make sure there was nothing else going on. One was to see a clinical psychologist who spoke to me and looked at my records and declared me a model patient, that the rest of her patients should aspire to be like!

The second was to see a Rheumatologist. My pain consultant however was adamant that if it looks like a dog (i.e. M.E.) and barks like a dog then it must be a dog (M.E.). I therefore paid no heed to my appointment, attending simply to ‘be sure’ but knowing that nothing was really going to change. I had M.E. and this consultant just like all the others would tell me to just keep doing what I was doing and he didn’t want to see me again.

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My appointment came on a bad day. I was feeling the worst I had felt for months. I had driven and walked too far the day before and I was paying for it that morning. By the time I reached the consultant, I was in a lot of pain and very fatigued. In hindsight, perhaps this was the best thing to have happened. There was no way this guy could simply dismiss me and say that nothing was wrong or say that I had M.E. and accept that it was okay for me to have to handle it alone. (I had already made me mind up to tell him that really I needed more support).

His questioning of my story was very different from previous medical professionals. They seemed to want a narrative – he rather wanted to know the progression of my symptoms and their timelines. He wasn’t interested in where I had been or whether or not I was working, he simply wanted to know my symptoms.

His next step was to get me to rank a series of very much M.E. symptoms (fatigue, dizziness, tingling sensations, brain fog, muscle pains) from 1 rarely to 4 everyday.

Finally, he did what I can only assume was a Fibromyalgia tender points test. His clear skill in what he was doing was obvious as he was able to pick up weaknesses in both my knees (hurt in a riding accident) and in my neck (sore for the last couple of months) – all without my having to tell him.

It was then the shock came. He told me that he didn’t think I had M.E. but rather something called Dysfunctional Breathing Syndrome or as it is sometimes known Hyperventilation Syndrome. I was vindicated in his statement that it was not a panic attack – they were very different. My doctor has spent the last ten months telling me I have panic attacks – despite my numerous times telling her that they were not!

 just-breathe

To be honest much of the rest of our consultation was spent with me going (in my mind), “sorry, you don’t think I have M.E.?!” on repeat.

Apparently, I breath too many times per minute – he guessed about 20 times per minute while a healthy rate should be about 8 times. Later when I tested myself at home, I got rates from 17 – 30. All far too high.

Additionally, if you breathe in, then out, then hold your nose, you should be able to do so for at least 30 seconds. 15 – 30 seconds is a sign of a moderate breathing problem, 0 – 14 a severe problem. I scored 12 seconds.

The rating test he gave me was also highly indicative of it. He said a score of about 10 was completely normal. I, on the other hand, had a score of 36!

His conclusion then was that I had this Dysfunctional Breathing Syndrome with secondary Fibromyalgia – i.e the Fibromyalgia was caused by my dysfunctional breathing. By over-breathing, I wasn’t giving a chance to Co2 to convert the O2 into my blood stream – this therefore in layman terms carried my breathing problem around my body. This, in addition, means that my body cannot handle excess acids (such as lactic acid) and the minerals in my body that would naturally deal with excess acids in the short-term would by now be nearly gone if not gone altogether. This therefore explains the Fibromyalgia type pain.

The suggestion is that this all started after I had effectively been ill for about 6 weeks, with a series of bad colds culminating with particularly bad respiratory symptoms in my final cold. It would also explain how for the first two months of being ill, all I experienced was intense fatigue and breathlessness, at times acute sessions of hyperventilation or as I have come to know them collapses. After some time however breathing issues began to create pain issues in my legs and the triangle across my shoulders to the top of my neck.

Of course, there is no guarantee that this is indeed what I am experiencing. M.E. may still be playing its role. I cannot therefore afford to get too excited about a curable illness.

If he is right however then this is exciting news. Within six weeks to two months of specialist respiratory physiotherapy, I should be right as rain. Inconceivable. The best news of course is that my private health insurance will now cover the treatment – they did not cover M.E. This means that instead of waiting for two months for my NHS physiotherapy appointment that came through today, I will only have to wait a matter of a week or two. Theoretically, it is possible that not only will I be healthy again soon but I could even be running by Christmas.

My mother-in-law said the news, ‘floored her’ and I totally get what she means. I am only just beginning to come to terms with it. I had myself all set for a personal battle for recovery or at least remission from the worst symptoms of M.E. I was emotionally preparing myself for no longer being able to work full-time, perhaps even part-time. To have the future path that you had prepared yourself for so thoroughly changed takes time to get used to.

Although I must not allow myself to get too used to it – just in case.

hope