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Revamp.3/3/2024 Putting Rare Disease Day in the picture on the 29th of February 2024, I focussed on medical gaslighting. It is the main theme of my memoir 'Recognise ME' which is due to come out soon. Its cover was revealed on the day as well.
The whole exercise of making the international awareness campaign stand out has taught me a lot. I used it to improve what I can offer here. I thought it appropriate to revamp this website. Have a look around. Let me know what you think. I was also able to expand my social media presence. I now have a Youtube channel you can subscribe to. There are a few videos there already. They will be added to gradually. I have embedded some of them with my downloads and links. My Instagram account is now connected to my facebook page, and waiting to be used. A big thank you goes out to Team Vliegen, for their patience, instructions and practical help in getting this far. In between the information I shared, I also posted songs. All of them have lyrics that can be related to from the perspective of a gaslit patient. The playlist was broadcast throughout the day. Having done all that, now my attention can go back to the book itself. I got my manuscript back from the editor. There are plenty of suggestions to work through to make it even better for you, my readers. So please forgive me for keeping this brief today. As they say: 'For now, I will love you and leave you', but also: 'I'll be back!' Those who like to be the first to receive any news had best subscribe to my mailing list.
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Rare.25/2/2024
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Imposter.18/2/2024 Imposter syndrome is something many gaslit patients continue to suffer from, long after they have regained credibility and respect. We have learnt that our bodies are ruled by our psyche, that it is foolish to trust what it tells us, however bad that might get.
The anguish in trying to decide whether help is warranted and if so, which kind is hard to describe. It goes far past a friend's advice to go and see a doctor, or a stranger calling an ambulance. Will I be believed? Will they find anything? Will anything be done to ease this for me? I am finding a similar thing is happening now. The time I allocated to writing, reading, rewriting and rereading, over and over again has been freed up. It can now go to PR and marketing. It needs to. If this memoir of mine is to have any impact, people need to know it is there. So, I do what needs doing, under the guidance of my publisher, Becky at Raven Crest Books. It is all new to me. I am on a steep learning curve. That in itself is exciting. So are the possibilities I see opening up as I collate possible contacts, looking up patient support groups, newsletters to do with health and disability, (future) professionals who may be of influence, and so on. I am like a kid in a sweet shop, dreaming of having it all, whilst terrified of making the wrong choices. Did I fool myself into thinking I had anything useful to bring to the table? Will anyone be really interested in or touched by anything I wrote? Is the standard of my writing good enough? Will it all go down like a lead balloon? Will I let people down? I cajole myself into thinking whichever way it all turns out, it has been a great adventure and educational as well. New skills have been learnt. New knowledge has been acquired. More importantly this project has given me the chance to develop new friendships with people who have been through similar. They keep complimenting and encouraging me in words and actions. I have to acknowledge they are relying on me to see this through. They believe me and believe in me. That is the very essence of a need I have been proclaiming since the start. I owe it to them, to you, to believe in myself too. It is what keeps me going, keeps me lifting myself over each next hurdle, however much I tremble. Team Vliegen has jumped on board with very practical assistance. That has taken some of the weight off. The more support I can get, the wider the reach will be. If you could all join me in creating your own ripples about medical gaslighting, together we could cook up a storm. I am happy to be a spokesperson, to tell my story to anyone willing to listen, or focus on a more theoretical angle of medical gaslighting. I can do that in person, or via the internet, in workshops, webinars, talks, or whatever format anyone can come up with. My book will be available soon. Come and visit me on facebook on Rare Disease Day, February 29th, for announcements about that and much more. I am happy to offer my services to anyone who wants to do the same. Perhaps some of you are better at spreading the word in the right places. Maybe you have contacts who could do with the information, or you would be good at researching where to find them and to contact them. Your talents might lie elsewhere, in the technical side of connecting with groups via the internet, spreading news on various social media platforms, editing videos, … Equally you might be the person for me to call to have a brainstorm of ideas, or who can get me back on track when my self doubt gets the better of me. Whatever you have to offer, I would love to hear about it.
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Forgot.11/2/2024 Frankly, I nearly forgot about my blog today. The three of us are still recovering from this flu. I only had a few hours of sleep last night, so snoozed during the day. In between I continued to feel rather drowsy.
Tonight father and son left, one to go back to work, the other to college. They could have done with some extended sick leave, but their motivation was high. It is testament to their commitment. I suppose it could equally be that they were happy to be free from me for a few days… I doubt that. Jean in particular seemed quite concerned to leave me behind. He now spends the two days per week that he has to be present in the office in person away from home. He stays overnight with my parents. It works well, on the whole. He helps them with shopping, and sometimes some other minor jobs. It is interdependence at its best. So there was a fair bit of packing and organising going on before they went. Then it dawned on me I still had writing to do. I am going to keep it brief, though. I would love to tell you about my steep learning curve with the publishing process. In particular right now the focus is on pr and marketing, and outside of my comfort zone. But if I want this memoir about medical gaslighting to have any impact, it needs to be read. For that to happen, people need to know it is there. It would be great if you could all help to spread the word. I would be more than happy to talk about the subject to raise awareness. If you know of any groups that might be interested, please let me know, or pass my information on. If you would like to be kept informed about the launch, related events, or any special deals that might be coming up, make sure I have your email address.
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Influenza.4/2/2024 When my husband is ill himself it is always hard. This time around his blood was taken, and Influenza A was confirmed. The roles become somewhat reversed. I lose my carer, and become one myself. At least I want to provide him with the tender attention he too deserves in his state of disrepair.
It is only for a few days, it will be fine. Yes, that is my first thought too. However, it takes only a few hours before it becomes obvious just how much is laden on him through the usual course of our lives. It lies hidden in all the small things. It was laid bare in the outcome of a gruelling assessment process that took more than 2 years to decide how much we needed financially to ensure a quality of life comparable to what most Flemish people can expect. The appointed budget will become available in about 6 years time, all things being equal. Meanwhile we pootle along as best we can. Any assault on his health lowers that capacity significantly. In addition to the lack of practical solutions, a host of worries come along. He was told his condition would be infectious for 7 days. Was there any way in which I could avoid it? I think the simple answer is clear. When will I catch this? What symptoms will each of us have? How bad will it get for either of us? What will the knock-on effects be? How far will my health deteriorate again this time, and for how long? Once it hits the question is what either of us can do to ensure the best short term care as well as the best long term outcome. The choices we make looking for solutions now, often have a detrimental effect on our future. Rest equals loss of strength and stamina. Easy food undermines my carefully ordered diet as well as putting more pressure on our finances. Temporary remedies risk setting off side-effects we try to avoid in other circumstances. Extra medication is needed to counteract those. It highlights how intense keeping the balance is for us all the time. The fear of a downward spiral is real and based on knowledge and experience. In our dilapidated state we attempt to look after our own and each other's physical and emotional needs. At what point can we say we succeeded?
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Anniversary.28/1/2024 The 23rd of January marked the 1st anniversary of my facebook page as a writer. It is impressive that I should remember that. The platform itself only mentioned it a few days later. I used to be good at keeping up with birthdays and such, but appear to have lost that capacity. If I followed my parents' example, I would have been celebrating starting to plan my memoir about medical gaslighting on the 26th of December, and writing its first lines on the 9th of January. I would have been identifying more milestones to mark along the way.
I wonder what it is that made the social media effort stick. In honour of my publisher, who loves a good bullet point, I shall list my thoughts so far (bullet point list 1):
People flock together around shared interests, so I naturally found (bullet point list 2):
What struck me was how two specific groups are particularly affected by medical gaslighting (bullet point list 3):
I learnt a lot (bullet point list 4): 1. About medical gaslighting
2. About writing a book
3. About the publishing process
I am looking forward too, to (bullet point list 5):
I might need your help to (bullet point 6):
Should you feel called to offer your support, please let me know. Thank you for being part of this beautiful adventure!
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Withdrawal.21/1/2024 Last weekend I had intended to write as usual. However, I found myself locked out of my websites altogether. It is typical for something like that to happen when I had psyched myself up to share something that mattered to me, a lot.
As I awaited a solution, I decided to turn to my facebook page instead. In an effort to keep all of you on board, I am about to repeat myself. I suppose there is an element of attention seeking in that. Sure enough, I could use your support and encouragement. Having you all rooting for me has made a difference in the past. I know it will now too. It took more than that to motivate me to open up about this issue, though. I put it off out of shame. Then I realized that is exactly why I need to share it. I fathomed that others may be in similar situations. They may be going through this on their own, feeling too vulnerable to risk mentioning it. This last year has shown me how important it can be to share my stories. I have received enough private messages to convince me of the power of recognition. So here I am, ready to spill all, again. Over the last two decades I have been taking strong medication. They include different types of antidepressants, painkillers, antirheumatics and antivirals. Since my neck operation in December 2022 I have gradually been reducing and leaving those out. It took a while for me to be able to identify and then to have confirmed medically that the terror I have been experiencing for a while now is a direct result of that. These days there seems to be a constant rattle at the core of my regulatory system. It is largely caused by withdrawal. This was made a lot worse by restarting the tramadol (an opioid) again when my neck issues flared up last October, and replacing them with anti-inflammatories in December. Until then it was manageable. My increased discomfort could have been due to a variety of other factors anyway. Now every evening for a couple of hours I am overcome with extreme anxiety. It presents itself during the day too if the slightest thing goes wrong. There is a hint of paranoia present all the time. It is sheer hell. Added to that my sleeping pattern is severely disturbed, and my cognition appears to be shot to pieces at times. That in itself is frightening. A friend dropped in last week. By the time we had worked out how we were going to position ourselves she had noticed how bad things are for me. She saw it in my face and in my behaviour. I love people who are able to say it as it is, and do so with care. She recognised my need for distraction, for something to drown out the chaos even if only for one evening. Before she left we booked tickets for the night out I could do with. She will be driving me and accompanying me, giving my husband a bit of time to breath freely knowing I am well looked after. The best thing to do according to the professor we saw last week, is to see it through for the next 6 months. After that we can evaluate what medication might need to be reintroduced, if any. My husband and I talked about our options. We have decided the book is getting our absolute priority. That means, yet again, he is about to take on most of the tasks I had gradually started doing again in recent years. I will focus on getting everything ready for publication and keeping you informed, using 1 of my functional hours every weekday. The other 3 to 4 will go to doing the necessary exercises, attending back clinic and other appointments, self care (getting dressed, eating as cleanly as possible, etc…), and being present for husband and child. Whatever is left can be put to something relaxing. I am applying all the methods I have learnt to give my body a chance to recover from this as easily as possible. This takes discipline beyond measure. I really could use your help to keep me on track and focussed on the future. Perhaps delegating some practical tasks would be a good idea too, if anyone is up for them. I doubt I can communicate about those needs gracefully, though. The lack of self-control makes me feel increasingly exposed. We will pull through, though. We always have. Please, would you hold my hand?
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Healing.7/1/2024 My beta readers were asked to read through my manuscript and give me their feedback on content and flow. They were carefully selected. I had some criteria about their demographics and circumstances. Above all I needed to trust them to give detailed feedback including any and all constructive criticisms. They should be people I could accept it from.
One close friend who would do an excellent job at lifting the book to a higher level, would most likely bring out my defensive side. We talked about this, and decided our friendship was more important. We both preferred to avoid the tension. Much like myself, a few of my readers have been hampered by health issues and by Life interfering in other ways in the last few weeks. Bit by bit their instant reactions have been trickling in, though. One has been more elaborate already. I have been posting some of the most positive responses, and sending them to my publisher. Thankfully there are plenty to boast about. As expected, and hoped for, there have been pointers towards improvement too. I had asked for them specifically. I should be able to take these on the chin, be grateful for them and use them productively. I intend to. For now though, as I let the most challenging ones sink in, it is adding to a more somber mood that has taken hold of me recently. Once I had sent the manuscript out, I found myself at a loss. I also experienced the backlash of having upped my pace of writing to get it finished. A neck operation was looming. The effects of that whole saga are also taking their toll. There was hope and disappointment along with the physical pain and discomfort. There were other health issues to deal with in the meantime. My body is rebelling against restarting high levels of pain medication, then changing them to other forms and taking them down again. It is taking all that I have in me to stick with the discipline of alternating rest with activity and adjusting the latter as necessary. It is taking all that we have in us as a couple to deal with the frustration, the new limitations and discomfort, and the associated mood swings. We know this too will pass. What keeps me going are the private messages from people who are often strangers to me when they first get in touch. They bare their soul, share their sorrows, and make it clear I am making a positive difference to their lives. Knowing that, months before publication is due, gives me the sense of worth that I lacked for a long time. I am intensely grateful to the friend whose recognition and encouragement pushed me into taking on this project, and to my loved ones who are carrying me through all the ups and downs it brings. If anything it has taught me how far I have come. I was pondering about the saying that time heals all wounds. Clearly that is false. There are injuries the effects of which last a lifetime. Equally though, when my father stopped smoking he was told how many years it would take for his lungs to clear. Similarly I was told if I diligently avoided gluten and cow's milk, the lining of my bowels would heal. In both examples it takes a commitment and discipline to bring into effect the potential that is there. Only a few years ago I was told, by several psychologists, that I should accept that I would always remain affected by the medical gaslighting I had suffered. I was encouraged to take the pressure off myself to come to terms with what had happened. Instead they recommended self-compassion. Perhaps that was the commitment that was called for here, combined with the time it took for the wounds to heal and turn into scars. Anyone with EDS knows how much wound healing and scarring can differ, and that time, patience and gentle attentive care do help. I have come to believe the same is true for recovering from medical gaslighting.
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Reflections.31/12/2023 Yesterday a lot of my thoughts went to what I should write here on the last day of the year 2023. I felt I should make an impact. The pressure of that sabotaged my ability to formulate anything that would make sense. Should I be looking back or forward? Should I focus on my personal achievements and dreams or ponder on what is going on in the world? Should I aim to be purely positive, realistic about the negatives, or find some kind of balance? Just as I was settling down to go to sleep, I received a message. A dear friend of mine passed away the day before. Instantly I was in reflective mode. It came with the realisation that from now on our occasional emails and the odd wave at each other via video connection will only be alive in my memory. The chance of catching up in real life in a few months time has gone. Along with other ideas, I had been thinking of using Esther, The Dolly Mama's post about 'end-of-year reflections' as a guide to what I might share with you. These are the topics she raised: 'Something… that made you happy you learned you wish you had done more of that made you sad you succeeded at you regret you want to do less of in the future you want to learn this next year that helps you to recharge' I would love to hear your thoughts! Meanwhile, allow me to use this list as end of life reflections to honour my friend, instead. What makes me happy when I think of Phil is the long list of beautiful memories I can cherish. She had an acute sense of humor, often used to lighten a heavy mood. She had a sharp mind, able to observe how others interacted, and ready to suggest improvements. She was solution focussed with clarity of thought. She had a big heart. The most important thing I learnt from her is the meaning of being of service to others. I heard her describe a painting in which a person was assisting someone else. She ended the description with: 'It spoke to my condition.' That is going to stick with me for the rest of my life: the example she set of spontaneously being of direct help to individuals. Of course I wish I had kept in touch more. What makes me sad, is the devastation that stayed with her after the expected death of her husband whom she had nursed, and the sudden death of her son which soon followed. The irony of the latter happening on mother's day made the burden all the heavier to bear. I humbly think I succeeded in letting her know what she meant to me, how grateful I was for her existence, that I loved her. I regret there was little else I had to offer. In future I want to doubt myself less. Connecting with people and enjoying friendship as it develops is good enough. I will continue to learn from her life and the example she set. I have often said it is the most important thing anyone can give to medically gaslit patients is the message 'I believe you and I believe in you'. It can be applied to other situations as will. To Phil that belief was always beside the point. What mattered was the need that she could ease. She noticed it, recognised it, and met it, spontaneously. I believe that often was what recharged her in turn. So those are my wishes for the year ahead: May you all find people with needs you can meet May you all spread kindness May you all come across plenty of people and occasions to be thankful for May you all make new friendships May you all enjoy maintaining existing ones May you all share love May all of these apply to me too. Whilst I often hear the opposite at this time of the year, I truly believe these things are far more important than good health, and go much further towards creating happiness.
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Simplicity.24/12/2023 Recently I read something about Christmas being the celebration of a birth that took place in a stable. It was pointed out that keeping it simple is fine. That suited me. Within our family I have always been the one to want seasonal decorations, music, food and presents. Since my neck operation was planned for the 14th of December, we decided to skip all that. When it was postponed, for a moment I thought of re-engaging. I was surprised to find out how easy it was to let go of that idea. My parents invited us to have lunch with them on Christmas day. They will make it festive. It will be cozy, but modest. All we had to do was get some presents. Then Dad asked after my Christmas Cake. It has become a yearly tradition for me to bake one, full of dried fruit, spices and alcohol. I start well in advance, so it can get 'fed' regularly with brandy, rum, whiskey, or something like that. I brought the custom over from England. I promised him a last minute version, forgot about it, and finally started on it the day before yesterday. It is now suitably covered with homemade marzipan, icing and nuts. When we woke up this morning, I was all too relieved we had kept from decorating and putting presents under a Christmas tree. The floor of our bedroom, which also serves as a living room, was largely covered in water. While we were busy cleaning that up, we toyed with the idea of having fondue between the three of tonight anyway. In Flandres this is what we call it when each person cooks their food individually in a shared pan full of boiling oil positioned in the middle of the table. Meanwhile I posted some pictures of our flood. My phone rang. Was it tonight, tomorrow lunchtime or tomorrow evening that we were coming over for a meal? I was concerned I might have imposed by suggesting we drop in to see friends who were also going to be on their own. She would like to cook for us, tonight. How blissful the realistion was that it truly is fine to keep things simple. The essence of Christmas is about connecting. It has something to do with offering each other light and warmth when the days are short and dark. I look forward to it gratefully. I wish you all a cozy and carefree time too tonight, tomorrow, and really all year round. |