As I talk about MS

So, here is a bunch of recent responses from those who hear about my MS-life, first time. Some are great, in total solidarity, written, told with the will to empower the MS-person. Some hint at the general understanding of chronic illness, disability in ableist perspectives. 

On the rare disease day -  February 29 - I shared a reel on Instagram talking about my diagnosis, noting how I received, how I am continuing. I put smiles in the center, photos with the lovely dogs, and with mom. I added Mercedes Soza's Gracial a la Vida... There is no exaggeration: I am grateful to life. This does not mean that I am happy. Indeed, I am not concerned much about happiness. There was a time when I had this aspiration to anchor on a happy life - whatever that means. But since looking at politics - as science - reading political ideas and political thought, trying to understand the claims of politicians to make the subjects, citizens, communities as happy as whatever it might be, reflections of thinkers, ideologues, philosophers on individual and societal happiness I came to a point where happens is as blob as the state. Perhaps, more than that - for, you can depict the state in its physical, material forms to an extent and even in intervals. But you cannot do so for happiness.

Then I started to taste life with its bitterness, sad moments, evil experiences, goodness as a totality that needs  joy and joyfulness for unfolding.. This state of being is as strange as the life of a butterfly - it is momentous, it might last just for a second, while it extends and expands infinity. It is a matter of temperament and not choice, preference, or some material, physical assets. Of course, it takes reflection, consideration, relationality to have it - you cannot possess it, own it, you can just have it and share it.

So, I have been trying to live with MS joyfully - those who are familiar with this immune system disorder would immediately think that this is bizarre, and trying to do is futile. MS - how can we live joyfully with this disease when you face sudden and braking pains, aches, constant fatigue, sporadic numbness and tingling. And above all when you live with imbalance - as I do for about seven years. Well, it is possible. You might start facing the fact that this world has never been perfect and that life has never been without problems, sadness, violence. But with or without MS we all live in this world and in our lives we face various, painstaking issues - mostly irresolvable. And inbetween these encounters, when we take a breath, look at the sky, see a flower, smell the salt in the sea, smile at a dog, cat, bird passing by, acting together with the ones who share similar concerns for a better world the joy that comes is invaluable. It is creative, refreshening and empowering. 

I find the joy in walks alone and/or with someone I do not need to talk, with someone whom I can feel the earth in silence. I find joys in animal rescue activities with the ones who share the care for animal welfare, I find joy in sitting, walking with the two rescued dogs - Pote and Milo - who are living with me - Pote since April 2022, Milo since June 2023. I find joy talking to them and when they seem to talk back, feeding them, playing with them. Everyday that I take them out for walk, no matter how much numbness, imbalance, pain there is I feel that it is going on OK with every step I take. 

I am not being faithful and/or resigning to fate - whatever it means. It is all about being stubborn for hope, insisting on hopefulness for I have come to think that it is a luxury for people like me to be hopeless!

Hopefull soon!

Hospitals - MD - staff - all the other stuff

 Nov. 22, 2023

It has been a long month. 

As I stepped into the Physical Therapy Unit in Çanakkale 18 Mart University Hospital about a month ago just for a prescription (Duxet 60 mg) they also wanted to have my blood tests repeated.

And then my PTH values appeared unusually high.

In the meantime I asked for a bone scan. Well, the results came up with osteoporosis. The physician immediately started with medicine based treatment. I have been using the medicine for three weeks. And the endoctrinologist whom I had to visit for the PTH values told me that I need to stop taking the medicine for them to evaluate the reasons for this unusal rise in the PTH values. The physician with whom I had appoint sat by the desk, his face, covered by a computer. He was surrounded by tensome students/interns listening to him. It seemed that neither the physician nor the assistants had time to listen me, and detail what might be the problem. For this visit, I had to pay extra money, considering that would spare me more time - here, in Çanakkale, I prefer to go to the University Hospital. It is cheaper, the physicians whom I had met until that visit have been mostlu kind, considerate, caring despite that I had not paid extra for them to examine me. 

March 5, 2024.

Now, the time came; and I need to make an appointment in order to see what is wrong in body that causes that much higher levels of the PTH. I will do so for the next week, certainly with the other endocrinologist. And this time, without extra payment. 

For some time, I keep moving. It is always hard to wake up, and still, harder to get out of the bed. I rely on the two brothers (Potê and Milo) to get me up from the bed; I rely on them to have the first walks of the day; I rely on the strays, the homeless to get me out of the gated community in which I have to live. They give me joy, they help me take deep breaths on the field, by the seaside; give and take kisses of sincere love, gratitude and care; face with the risk of bites if I cross lines. I rely on these lovelies to see the simplicity of life as it is.

And when it comes to the hospitals, the medicine, the piils, the physicians, except fot some rare examples, the  burden, the weight, the following tiredness are severe.

As of now, numbness, tingling, aches, pain, fatigue are all part of my life. I learn to live with them, and to continue going out, spend time with dogs, cats, and by the sea, share time with certain friends over and over again, despite the frustration they bring into my life. Yet, I have to confess, when it is the non-human animals the frustration falls short of defining my everyday life.

Walks with Potê

It was on the first day of December in 2021, one year one month ago, that I wrote my last notes on the blog - after a six-month-long silence. I was not sure whether that was a return, a 'back again' to writing in and on my days with the MS. Alas! So many turns in life means so little to write about. This is at least for me the case - I need time to write on the things that come to pass. That's why I can only take notes in my diaries. After a while, as there is some temporal and/or luckily spatial distance between the things to be told and the one to tell them I can pen them down in the way I'd like to narrate. What is life if you cannot manipulate it! 💃

...

So many things happened; sad ones, saddening ones come to my mind first. I have lost a dear friend/colleague/feminist comrade/a member of our threesome storytellers group, the Sewing Machine, someone with whom I thought we would continue writing, laughing, talking, conversing many years ahead, someone whom you'd think keep your memories safe in case you happen to forget things... She was fast in many things; her passing happened to be fast, too - too soon... I am missing her everyday, she visits me in my dreams, there is this sorrow as those whose loved ones, close friends are no longer in this life would know.

Before my friend passed away after a one year long experience with a rare type of breast cancer my other comrade, 16,5 years old, Dört (4 in English) passed away due to chronic kidney disease complications. Losing a paw friend is always filled with so much pain, which is not easy to share - in case you are not with like-minded people who approach the non-human animals in similar manner.

                                            Dört in early 2022.

I closed 2022 with the loss of my dear aunt on December 30. She was one of those unique human beings whose presence on this earth is a gift. I miss her, too, everyday.

2022 brought Potê to my life. This time a rescue dog, rescuing me without noticing what he is capable. Or perhaps he is far more ahead of me-the-human to know what to do, when to do, and how to do. He came to my life exactly a month after Dört said goodbye. That was pretty soon, I am still surprised with it. But in the case of human and non-human animal relations things are meant to be; almost futile to search for whys. The best thing is to learn and re-learn the hows. Now, as I am writing this I am seeing that my relation with MS is built more onto the hows, rather than the whys. And it is mostly this type of connecting to my body - now with MS - that keeps me going. 

                                                            Potê in his eighth month

                                            

...

2022 also brought in new medication. My neurologist and I decided that Aubagio has not been working on my body, or perhaps, my body did not like Aubagio so it insisted to give me additional symptoms earlier than expected. So we switched to Cladribin - I would have never guessed that once a cancer treatment might be now an MS one. Strange this med is it seems to have worked thus far.

I do not have to use it everyday. Only for four days in two months annually for two subsequent years. Then I am not supposed to use it for - if I am not wrong - four years. 

It might have to do mainly by the med change, we might also add the new town by the seaside I am living in, and also the daily walks with Potê - I assume all these factors have helped me to move from 300-400 meters walk at most to around 1 km daily. From slow to rhythmic - and since it's with Potê not slow at all! Though I need some time to rest and get the energy back afterwards I cannot wait to go out walking everyday. 

Walking - mostly the idea of walking - helps me to come to terms with fatigue and pain. I cannot make them disappear but I can make them silence a bit as I move my legs, not always in balance, well, actually mostly imbalanced :). 

Yet that's it, I walk everyday by the seaside in a small town, familiar to storms, really strong ones; a town of waves and storms.

Seems that I am finally settling with my life with MS - if this is possible at all with such a playful company in my body.

Back again - or?

Six months - two states, two countries, four cities, two towns: MS is the constant

My days with MS took me six months to return back to dayswithMS . It is not that I was with the attacks, laying low with everyday pain, dizziness, tingling mostly on my legs and feet and hands, some times visiting my upper back. They have been all there; I have been living with them, unsurprisingly with the regularly lengthening list of pills.

Six months took traveling between states, between countries, between cities. It took sorrow, contentment, coming to terms with the family history. Long distance drives - which I love and appreciate that despite the tricky progress with MS I can still hold onto the joys of being on the road... Long distance drives took me to cities, towns where I was/am welcome. Now, I know that I am welcome by the seasides, by the Mediterranean, by the Aegean Sea, and by the Marmara Sea.. They welcome with the healing by and of the sea. Although I am a regular MS woman with the heat and temperature when it is the point zero-sea life my pain is more bearable, my balance is better and less frequently lost - though the tingling is always there. 

As I am now living in the country that I was born, on land that I never felt to belong to, but which I always felt familiar I finally returned to the neurologist with whom I have felt safest. Dr. Munire Kilinc Toprak is the neurologist who diagnosed MS despite its sneaky progress through my body; she has never left me despite my long distance travels to other cities, states and countries. She is the one who could follow up the sneaky progress after the diagnosis - so here I am with (Active) Secondary Progressive MS. 

In September 2020 I had started to use Mayzent; but my neurologist at the UPMC did not want to risk the serious side effects, especially regarding heart conditions. So, under her supervision I returned back to Aubagio. Now, under the guidance of Dr. Kilinc I will be starting to use a new medicine - Cladribine - brand named Mavenclad. Of course, I need to have checks with the Pulmonary Medicine, Infectious Diseases, Internal Medicine. That would take a lot of time - for a person like me who feels it increasingly difficult to step out especially during the COVID-19 pandemic.

I have learned that RRMS and SPMS cannot be distinguished easily. The tricky part is that you do not have relapses in the SPMS, but your physical conditions worsen consistently. You lose balance - in the real sense of the term: progressively - the tingling that you are familiar with in the days with RRMS turns out to be a fact of your body. It does not stop, just changes in its extent and intensity. Fatigue has always been there, now it changes not day-by-day, but in hours throughout the day. And the tons of weight on my eyelids - especially in the mornings. Sometimes during the breakfast I feel like falling into sleep. No way, I take the challenge 💪; and continue with my delicious tea. 

So, I have come up with different tactics in my everday life with MS. Linette Gray-Goodman who have been living with MS for three decades and with SPMS for two decades gives the following advice: "Stay positive and don@t let the MS be in front of anything you want to do. Because if you put it in front of you, you will not live a normal life." I doubt the idea that we can live with MS by challenging it all the time. It directly affects my bodily moves, physical capacities| the things that I can do on a daily basis depends on my mood with MS - in the case of SPMS on my hourly mood with MS. So challenging sounds too chivalry and thus, dubious to me. But to dismiss the option of challenging MS does not mean surrender. On the contrary, it points at another option out of this win-or-lose, challenge-beat-or-surrender binary: living in peace with your body; living life as it is with the joy you find, with the sorrow it brings.  

I do not know how much I could conform to the techniques of this tactic but it has been helping me to come to terms with the loss of energy and speed that I used to have in my daily activities. I am learning much about my body, how my mind and emotions relate to it; how my body helps me to appreciate the experience with emotions...

More to come!

 

Spring brings in

Spring brings in many new things in life. It offers the grounds for us to shelve the winter-assets, to throw away the no-more usables, to see once again how minimal we can go with, how less we all need, how unnecessary it is to have a lot of things in our possession. It brings lightness to our lives, once we breathe in the Spring, especially the April breeze then we see the difference between the unnecessary things in our lives, those that we make ourselves believe we cannot be without but which are in fact just accessories. 

This Spring offered me a lot, a multi-variety pack, leading me to confusion, somewhat peaceful. Peaceful that I do not feel any resentment in the face of all the hardships that come by - that seem to never end. Peaceful in the sense that I welcome the ups and downs in my daily routine, which get me confused all the time about what I can do, I cannot do, I want to do, and I do not want to do... Confusions about my place on this earth - except for passing by; passing by all the time. 

Spring brought me the awareness that I have been used to living with MS, at last - that I am not ignoring or forgetting it anymore. I am not forgetting that my balance is not well. I am not forgetting that there are days when I cannot wake up until noon. Not forgetting that there are days when I cannot hardly move - not that infrequent. Now I am more aware of my capacities, how far I can go, what to expect - approximately - what to claim, what to hope for and what not to...

So, I said no to myself to accept a reasonable job offer that would save for me one more year in writing and mostly teaching. For I am very well aware that I cannot go beyond a one course teaching load - two sessions of the same course, at most. I know that if I public transit for 30 minutes or more back and forth than I need to rest for the rest of the day and more. It is as if not doing more than one job a day; or perhaps not undertaking more than one task a day - which is really difficult for a multi-task person to adjust to. 

I am trying to adjust. 

And this adjustment process, which, I now know, is ever-lasting since MS is a playful accompany of my body-mind that is not easy at all - no way! 

Most recently, in my job I was offered two options: A part time teaching - one course two sections; and a visiting position to teach three courses per term. My MS life made me understand that it would be a futile attempt to go beyond one course a term. The course with two sections was the most fit option in that sense but the pay was almost 1/10 of the position with the three courses per term. Apart from the difference the first option would not allow me to afford the routine expenses - which are really minimal in the course of my daily preferences. The second option came with a decent income, also with a glimpse of hope that it might help me to extend my stay here, in this welcoming city of steel.

I just wanted to linger with the idea that I finally have options since a couple of years... Options that relate to my professional past - not the options as in the case of choosing between Mayzent and Aubagio; staying in bed until noon or forcing myself into the shower; renting a car through Zipcar or a car rental agency... cooking tofu this afternoon with salad alongside it, or just having some frozen food....So, I valued this opportunity; and slept over it. Then in the morning, which greeted me with the  a relatively fresh body and mind - at least only with pains, and bearable tiredness rather than a temptation to surrender the gravitation and sink into the bed - I wrote to my colleague sharing with she/him that due to the diagnosis that I have been carrying with me for some four years now it was impossible to go with the better option. the other option was dead at birth - we all knew it. But this is the US - everyone needs to be respected to give their own decision; to speak the already clear in their own words. So here is my reply:

"...

I thought over and over again about the possibility of teaching three separate courses - since you first mentioned about the position. But I do not want to step into a possibility, which according to my physical performance in the past four years, and especially during the pandemic would most probably result in impossibility. Again: How I wish I could! 

..."

And look at the response that spells the very basics of what a nice heart and considerate mind might look like - just picking one dear sentence that touched my heart:

"

...

I respect and appreciate your honesty and kindness toward yourself and your regard for the students in considering your capacities

...

"

So, here we are I am living with MS, trying not to surrender to it, but being realistic about my capacities and capabilities and spoiling my mind and body accordingly. I wouldn't end by a mere pollyanna-style "life is good" but I shall not refrain from sharing my recent mood:

I have been meeting with such nice hearts, valuable minds which turn out to be indispensable in carrying on with the ever increasing complexities of living with MS under pandemic/crisis times. It gives me hope not for an ideal future - whatever that might mean - but for not being left in solitude even those times when you feel loneliest of the earth!

Loneliness shall not be the main problem in our lives with MS; we should form our connections with the MS world and non-MS world; regularize and systematize those connections. 

Taking another step

 So, now I'm trying English writing to see whether I will have more followers and followers who would read, comment, share their experiences with me.

I shared the previous posts in Turkish with the MS groups in Turkey whom I thought would be interested and would follow the blog regularly. I also shared it with a couple of friends. But it seems that I am quite off the scale😏 

For the time being this is my first piece in English. Later, as time and energy permit I will try to translate my Turkish entries into English.

"The experience with the pandemic made me see that it is increasingly becoming difficult for me to be present in the office setting physically on full-time capacity fir five days a week from 09.00am to 05.00pm. This is totally due to health concerns. I am looking for jobs that are more flexible where I can work from home but when necessary I can be physically present in the office. Certainly, the distance between where I stay and where I work is an important factor in my ability to be physically present in an office setting. If there is less distance between work and home it is less challenging."

These were the words through which I shared with a colleague my state of (physical) capacity, my rather fluctuating capacity to be physically active through the weeks and, sometimes on a daily basis. The pandemic offered me the experience to stay almost all day at home. It was good with my boss as I call her, the dog, 15 years old, my wise accompany:)) I gained weight around 3 pounds; got reluctant to go outside which was somewhat reasonable under pandemic conditions. I forced myself really hard to stay hopeful, and times challenging the reality, the state of everyday facts in the face of increasing COVID-19 cases; increasing ratio of deaths due to COVID-19 related complications.

My father's passing away due to COVID-19 related heart failure in September 2020 showed me the challenges of physical distance. It was a time where I had handle the procedures from far away, a time of self-reflection, talking to dad in my memories, dreams - which still continues - and I could only spare a bit of that for mourning - which I know will not come to an end until I stay by his grave and whisper my goodbye stories.

Now, with the both doses of Pfizer I am feeling relieved, but still tempting to stay at home, and still reluctant to go out. 

Life might be really good at home, of course, when you are surrounded by your loved ones in peace.

Bak postacı geliyor

Salı günü ikinci denge terapisi randevuma gittim. Randevuya gittim demek kadar kolay gitmiyorum. Buradan hastaneye gitmek için ya otobüse binmem gerekiyor ya da araba kiralamam - sahi bundan bahsetmiş miydim, daha önce? Bakamayacak kadar üşeniyorum. Hatırlamıyorum da... Yaş almakla MS semptomları arasından seçim de yapmıyorum, bu konuda.😊 Dolayısıyla bahsetmediğimi varsayıyorum.

Kısaca, hastaneye otobüsle gidiş yaklaşık 50 dk., eh benim bir de pandemi nedeniyle kamu taşımasına mesafelenmem var. Bu nedenle araba kiralıyorum. Ya bildiğimiz araba kiralama şirketinden. Ya da, zipcar ayarlıyorum. Burada oturduğum eve 10 dk. yürüme mesafesinde bir zipcar vardı, mesela. Pek matah bir tarafı yoktu; ama 10 dk. mesafe buranın şartlarında pek yahşi. Ama işte, geçen ay mekanik bir arıza nedeniyle bakıma alındı. Alınış o alınış...

En yakın diğer seçenek 20 dk. yürüme mesafesinde - google haritaya göre 20 dk. - benim adımlarıma göre 30 dk. mesafede bir araba. Kia, fıstık yeşili .))) Adı da, Shanan. Zipcar'da her arabanın bir adı var. İşte geçen Salı Shannan'la denge terapisinin ikinci kontrolüne gittim. Bir önceki Salı gittiğim kontrol sonrasında verdikleri hareketleri dört gün yapabilmiştim - doğrusu üç buçuk gün olabilir. Böyle konularda kendime bile yalan söylemekte ustayım. Bu kez yine 45 dk.lık bir kontrol sonrasında eskilere yeni hareketler eklediler ve bir sonraki Salı için randevu aldım. 

Ama önümüzdeki hafta Perşembe günü rutin MR'larım var. Denge terapisini de o güne yerleştirmeye çalıştım - maalesef. Haftanın iki günü hem araba kiralamak çok pahalıya gelecek, hem dışarıda olmak çok yoracak. Bu durumda bu Salı'yı iptal ettim; bir sonraki Salı'ya kaldı, denge kontrolüm. 

Tabii, yine Pazartesi'den bu yana ne yoga yaptım ne de denge hareketlerimi.

Bunca randevu, denge terapisi, MR arasında postacının ne işi var?

Şu işi var: Geçen Salı insana neşe veren güneşli bir gündü. Serin havada yürümek ayrı keyif. Yorucu, ama güzel oluyor. Evle Shannon'ın park edildiği konum arasında 1.4 mil mesafe var. Ortada bir yerde de postane. Salı günü randevu öncesinde postaneye uğramayı ve beklettiğim iki ayrı bürokratik paketi iki ayrı adrese postalamayı planladım. Yaptım da. Ancak, bürokratik postalamalarda hep olduğu gibi bu kez de beceriksizliğim ön plândaydı. Günün güneşinden, güneşin parlaklığından, havadaki tazelikten, tazeliğin yaydığı müthiş kokulardan ve öten kuşlardan sonra postanedeki kadın çalışanın olumlu yaklaşımı, bıkmadan tüm sorularıma yanıt vermesi, zarfları ayarladığım, adresleri yazdığım ve bir dolu düzenleme yaptığım kısımdan onun arkasında durduğu cam bölmeye geçişim arasındaki sıklığa ve her türlü belli olan sakarlığıma takılmadan sabırla cevap vermesi; sesini yükseltmeden, ya da ülkede sıklıkla karşılaştığım, tamamen anlamsız bir şekilde yanıt verme - yanıt vermeme ve muhtemelen küfretme - örneklerinin tam aksine hep sakin, sabırlı sorularıma yanıt verdi. Ayrılırken belki yüzüncü kez teşekkür ediyordum

Denge terapisi de fena geçmedi. Sonlara doğru yoruldum. Ama çok dert etmedim. Herkes çok olumlu, neşeliydi. Pandemiye rağmen böyleydi. Gerçi bu grup genelde anlayışlı, sakin, huzurlu. Ama bu kez havada ayrı bir sevinç vardı. Güneştendir. 

Kesin öyledir.

Sanırım buzlarımızı, mesafelerimizi, kızgınlıklarımızı, sevmemelerimizi ve hırçınlığımızı güneşe tutmak çok yahşi oluyor.

Güneşli, serin günlerimiz çok olsun.

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