The threat is near

You can find part 1 and part 2 here.
Warning: this blogpost contains strong language and is written in a depressive state of mind.

So, this blogpost is (again) about the threat of becoming homeless. I’m sorry if this is starting to get boring, but this is just the most important thing in my life at the moment. I can’t really think about other stuff anymore. That’s because a roof over your head is one of the basic needs. And you can’t do stuff like developing yourself on for example appreciating art, if you’re basic needs aren’t fulfilled. You can see this in the pyramid of Maslow.
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[Picture with the pyramid of Maslow, showing a ranking of the needs. 1. Physiological (food,water, warmth, rest) 2. safety 3. belongingness and love 4. esteem 5. self-actualization. To reach number 2, number 1 needs to be fulfilled first etc.]
So how’s the situation? We need to leave sooner. I already wrote that was a possibility. Why? Because I didn’t trust their word. And sadly I seem to have been right. We need to leave within 14 days(!). Do we have another option yet? No. Do professionals help us? No. You know why? They’re busy, there’s nothing they can do for us because our situation is too complicated, it’s already 5pm, you should go to bureau Z (which just referred us to this one), or they go on vacation etc.

I’m starting to think of creating my own “back up plan”, meaning suicide if all goes to hell. Because I don’t want to suffer so much anymore and I think I would rather kill myself than live on the streets with all our disabilities. I mean I still have chronic pain and chronic fatigue and have to live with all the traumas, so daily life wasn’t that fun anyway. I just kept trying to make something out of it and think positively. But right now? F*ck positive thinking.

I still have a first plan (the suicide is the back up) and I’m still working on that. But I have no news regarding that yet. So far there are no options like at all. Finding an accessible house that doesn’t have a high rent seems impossible around here. Apparently houses still don’t have to be made accessible, or they are being made accessible by people who don’t know what you need for that (“the building is wheelchair friendly, just 3 staircases”). And a house while not having enough income seems impossible as well. We can’t get a higher income, some kind of financial support from the government…

Ugh, I’m sorry for my rant. It’s the stress I guess. What am I going to do right now? Well, ironically I kind of have to keep living like nothing is happening, just in case we can somehow avoid becoming homeless. So I’m still trying to go to physical therapy. Because I don’t want to screw up our life when eventually it was preventable. I need to think of the grocery shopping list, I need to plan some appointments in December with the physical therapist, try to eat healthy etc. It’s kind of weird how we now have such different parts in our lives…

I hope everything is going well with you. I hope you didn’t find my blogpost because you are in a situation that might turn out into becoming homeless. I wish you all a nice day with lots of fun. Everyone needs happiness and lighter moments.

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My experience with orofacial (myofunctional) therapy – part 3 (conclusion)

This is part 3. You can find part 1 and part 2 here.

I have written about this topic before. You can find my two previous posts here (1) and here (2). In this little series I tried to keep a little bit of a diary/share my personal experiences along my journey with this (for me new) therapy. Now it is time for my (probably) last blogpost.

To make a long story short: I have quit this therapy early. I just could not work with this therapist. He would not respect my boundaries/physical limits, mostly regarding pain. My body is extremely high sensitive to pain and I need to be very careful with everything that I do. Because I also recover much more slowly from pain and I am more easily damaged. With this therapy I got ‘massages’ to make my jaw and neck muscles relax more. But these were extremely painful and I would be sick (flu like symptoms), having extreme neck pain and headache (and being unable to move my neck) for at least a week. This is an extreme response, so please don’t be frightened if you’re going to try this therapy. This kind of extreme response is not good for your body, the therapist even agreed to that. Every time we would make agreements on how soft his touch should be and that he had to stop if I or my companion (usually my partner a.k.a. fellow Hippo) asked him to stop or be more gentle, because it was hurting too much. But every time he would not listen to it and I have tried it multiple times with different people as my companion (and the goal was that I would be able to go alone but that went very wrong when I tried that). I have tried to talk to him and talk to his secretary and write it in an email and it would not do anything. I finally came to the point where I realised I had to listen to my body and protect my boundaries and that I had to quit. He would not accept that, but I eventually cancelled my last appointment and never made new one again. Like I said, I don’t expect you to have this same experience and I don’t want to discourage you. I will try to point out the positive and negative points I experienced with this therapy.

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[Photo of a physical therapist turning a patient’s head]

+ It is a combination of exercises, which you can do yourself as soon as you learned them, and of the therapist ‘massaging’ you. This is a positive point for me, because just doing the exercises did not work well enough, but the combination works a lot better (which I’ve experienced with other kinds of physical therapy as well).
+ You can do the exercises at home, so this will save you appointments. This might also be a negative. I, for example, find it difficult to do my exercises at home. But I am willing to go to the gym/therapist every evening. But maybe I am just a bit crazy that way.
+ It might not only help against the pain in your jaws, but it might also relieve headaches, ear pain, neck and shoulder pain and even back pain. My therapist also moved from primarily treating my jaws to primarily treating my neck after a couple sessions. Most therapists who give jaw therapy are also specialised in back and neck problems, so you don’t have to switch to yet another one, which I prefer.

– It can be quite a painful therapy, because they will put a lot of pressure on muscles that are already hurting.
– The therapist has to touch you. This was frightening for me, even though I did not take off my T-shirt and he never went inside my mouth (which might be necessary, this depends on your physical complaints). I was always chitchatting with him during therapy so that helped.
– It is normal to have extra pain or soreness and stiffness, tiredness etc. for up to 2 days after the the therapy. This is something you might have to take into consideration for when you schedule your therapy. This also depends on how the condition of your body is before the therapy, but I could not do anything for about seven days every time.

 

Personal conclusion/evaluation: I have the feeling that my neck problems have been worsened by this therapy (because he did it way too much and too hard). It does go a little bit better with my jaws, although it didn’t do anything against the grinding of my teeth have it when I sleep. I had hoped I would have slightly better results, especially because my neck problems are quite terrible now. And my anxiety has become worse, because he did not respect my boundaries and did not listen to me. I do think this can be a useful therapy and it is worth a try. But I would strongly advice you to listen carefully to your body and see if you have a match with your therapist. I have also heard more positive experiences than mine, so I hope your experience will be better. I don’t think I will try this therapy again, because it is just not made or my kind of body with chronic illnesses. Maybe I will try it again if I am able to find a female therapist, because they usually understand a bit better how much strength they actually have.
For now, I will keep wearing my splint at night and keep paying attention on relaxing my jaws during the day.

Photo source

My experience with HotYoga

I’ve written about one of my sports before (horse driving). I love sports, but there are not many things I can physically do, since I have a lot of problems with my hands and with my legs and a lot of other body parts. However, I do sport. By adapting everything and listening carefully to my body (and if necessary some extra pain meds, inhaler and other helpful things) I can do sports without the grave consequence of not being able to walk for a week, or having to pop too many painmeds.

One of the sports I picked up a few months ago is HotYoga. Yoga in a room of 40 degrees Celsius. I’ve done (regular) yoga in the past, but couldn’t do this anymore. Such a shame, because I love how it gives you more strength + I could use some relaxation and breathing exercises. I go with my mother, because I don’t want to go on my own (in case something goes wrong and because I can’t drive myself there). Sharing a hobby seems to have strengthened the relationship between us, which is great.

I told the instructor I had rheumatism, that I couldn’t do all the exercises and that I have to sit down often, so she didn’t have to worry. Usually sitting down means you’re dizzy and I didn’t want her to worry about me and come to me every 5 minutes. It’s been my first time that I told a regular instructor before the beginning that I had rheumatism, but I’m glad I did. I didn’t tell anyone else, even though I’m not ashamed of myself anymore or feel the need to hide it, it’s just personal and I don’t think they have a need to know. If they ask questions, I will probably answer them. It seems that the others have accepted me, which I’m very happy about. It feels very uncomfortable if you just can’t do “your own thing” and I don’t want to have to justify my choices to everyone who don’t even know me. Although they seem to still find it weird that I put 4 yoga mats on top of each other.

For me, it doesn’t really matter if I go to a special or normal class: I have to keep paying attention to my entire body and to adapt the exercises to myself. Thanks to my sports experience I’ve been able to adapt exercises quite well. It’s very important to learn that yourself, because in my experience instructors usually find it very difficult to adapt things so you can do them too (even if they give special classes).

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[Photo of the back of a sweating woman with her hands folded on her back.]

Usually my muscles can’t relax, that’s something typical for fibromyalgia. But this heat and that for 1.5 hours, that’s something that works for my body. I also do exercises to strengthen my muscles, which is always good,  if I don’t overdo it (which I would do if this were a normal aerobics class). I can do exercises I normally wouldn’t be able to do, which is nice. Oh and it helped my body to start sweating, lol. I just wouldn’t sweat for a long time during the classes, but now I finally started pouring out too just like everyone else (they say that’s a good thing). Because of the heat, the exercises are also more slowly and I need that. Just like we have at least 10 mins of relaxation/meditation time at the end of the class and that’s very good for my muscles as well. Usually every exercise is done twice for each side, but I can always do one round and then sit the next one out. Or I don’t repeat the same side immediately, but do the other side first etc. etc.

In this heat I wear a normal sports top which covers my belly, but I also wear shorts. I have scars on a.o. my upper legs so I can feel quite uncomfortable with showing them. But I’ve experienced that in my case, people usually don’t see them, unless you point them out (they’re white). I often can’t shave my legs and armpits, which can be an issue too. I’ve always had a negative body image and often have trouble with my clothing when people start saying that rape happens because of your clothing. Which is total bullshit, but sometimes it just gets to me. I really think this HotYoga class has helped me accept my body more. During class I’m not ashamed of it, because nobody looks at someone else. This also made me change my thoughts of my body and me in general: “I’m acceptable, just like everyone else. I’m allowed to do this too” etc.

It’s still painful to do this sport (no surprise there since everything is painful), but with all the adaptations I made it’s managable and I enjoy going there. It’s also good for my asthma, since I really have to control my breath in this heat and good for my mind (also thanks to the heat). I’m not really into meditation or chakras or anything, but that’s fine. I don’t have to chat about that with anyone and if I prefer to pretend I’m lying on the beach (which is very easy in that room) at the end, who cares? It works for me 🙂 For me it really is the combination of the heat and the exercises, since just sitting in the sauna for me wouldn’t work (back pain!).

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[Photo of a sweating woman with her arms stretched out.]

I’m very happy that I decided to try this out and can really recommend trying this to anyone, although I can’t guarantee it will feel the same for you. If you want to try out a HotYoga or BirkramYoga class, please keep in mind that you need to get used to the heat, so be careful. Don’t immediately sit in the hottest places 😉 Oh and I also drink water in between, but I’m one of the very few.
Keep in mind that the instructions are for ‘average’ people and bodies, don’t stretch yourself too far (in this context you could interpret this in two ways, LOL). If something hurts, stop. For example: My balance might be good during a certain class. But my standing foot hurts a lot. Then I won’t go into full tree pose, but let my other foot rest on it’s toes. For balance I could do more, but my standing foot can’t endure all the weight. I’m still doing the exercise and training muscles, but I will be able to walk afterwards.

Most important thing: do what you feel most comfortable with and listen to your body and mind.

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My experience with orofacial (myofunctional) therapy (so far) – part 2

This is part 2. You can find part 1 and part 3 here.

In a previous post I already talked about how I got introduced to this therapy and why. Now I’d like to talk about how the therapy has been so far.

The first appointment went better than I expected. Just some talking and he gave me a couple exercises. Both my fellow Hippo and the therapist did them with me, so I wasn’t that ashamed when I had to open and close my mouth like a goldfish (well, ok I still was, but I hadn’t done it if they weren’t doing it I think, sshht..)
The second one was a surprise though. Somehow, because of the first one, I didn’t think he would touch me. I thought he would just give me some other exercises. That’s why, when my fellow Hippo asked if he had to come, I said I could try it alone (I try to do it alone, unless I’m certain that something tough will happen, such as touching). But he knows me well and of course I prefer he comes along. Now that I know what happened, I’m really glad he came. Thanks to him it still went well and I stayed calm. Otherwise I probably would have panicked.

We were talking about how it was going and suddenly he told me I should lie on the bed, with my head in his hands who were in front of his… well I was afraid I would be lying on a certain body part, but my fellow Hippo assured me that didn’t happen because of his hands. And if he would have pulled them away, I would be lying on his jeans he said (I don’t really agree with that part, although technically it’s true). He ‘massaged’ my ‘face’, including the back of my head and my neck. It really hurted, but I could lie still and don’t show it (I’m not sure if that’s a good thing. Some people say you should tell or show when it hurts and others don’t). My fellow Hippo and him were talking a lot so that created a little diversion. I even talked, while he was ‘massaging’ me. Funny though, since I told him I decided to skip my massage exercise because that one hurted too much. He told me I had to do it really gentle, so I almost wouldn’t feel my own touch. However, he really put pressure on it, so that was a bit ironic (and a surprise).
I still had some extra pain around my jaws the rest of the day and that lasted for a week. If you’re going to do this therapy, I hope me saying that doesn’t scare you. My body is extra sensitive to pain, so even soft touches hurt and the pain lasts longer.

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[Photo of a woman lying on her back with her head being hold in the hands of a therapist, massaging her neck/the back of her head].

On this photo it seems to be done really gentle, but that wasn’t how my ‘massage’ went. I also didn’t lie with my head on the bed.

Everything went well, so I’m glad my fellow Hippo decided it was better that he joined me this time (it was a surprise for him too). Friday I have my next appointment (then it has been two weeks ago). My fellow Hippo and I already decided that he would come then too. The therapist doesn’t mind it, so that’s nice (he seems to enjoy talking with my fellow Hippo actually). I hope I can ask him what his plans are for the therapy, so I can prepare myself better and hopefully not burden my fellow Hippo, but go with someone who gets paid for it. I also think this therapist might be a good ‘normal’ physiotherapist for me, since he seems to know a lot about fibromyalgia.

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My experience with orofacial (myofunctional) therapy (so far) – part 1 (my referral/introduction)

This is part 1, you can find part 2 and part 3 here.

Orofacial therapy, or as I’d like to call it ‘jaw-physiotherapy’. Before a couple months ago, I never heard about it. Untill I switched from dentist (because I moved to a different city) and she adviced me to do this therapy.

For many years I’ve been having problems with bruxism, a.k.a. grinding my teeth. It wakes my fellow Hippo up, it damages my teeth and it hurts my jaws.
As you can probably guess, going to the dentist isn’t my favourite pastime, if I put it lightly. I’m actually really scared and it feels like I’m getting more scared over the years. However, I do go about twice a year (the last time with thanks to my fellow Hippo). Because I was for the first time here, I got a long appointment. My previous dentist also knew about my bruxism and gave me an occlusal splint (that doesn’t fit well hurts and even changes the positions of my upper teeth – which is something that shouldn’t happen, because now I can’t put my teeth together during daytime. But my previous dentist wouldn’t make me a new one). I told the new dentist about it (once again with thanks to my fellow Hippo) and that I keep on grinding my teeth. A lot of people stop grinding when they get the splint. She told me that they can make an occlusal splint of different material, softer so it wouldn’t hurt, and she told me about this therapy. I haven’t made a new occlusal splint yet because of the money, but I did start with the therapy.

Not many physiotherapists are specialised in this, so I didn’t have much choice. Actually, just one. A man. I’m afraid of men and if possible, I ask for a female. After a lot of talking with my fellow Hippo, we decided we would try it and tell the therapist right away that I have PTSD too (we actually don’t remember if we did). My fellow Hippo would come with me – at least the first time. He actually always comes with me, but it’s too much for him to handle all my appointments, because he has mental and physical illnesses too. So we’re working on it that I do more with one of my ‘official guides’ or alone.

I always get afraid when I have to start a new treatment or get an examination, so first I always try to find as much information as possible. However, I could hardly find any experiences with this therapy. I’ve been 2 times so far, because of a long gap between my intake and my second appointment (too busy with other appointments).

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[Photo of one side of a skull with some fake muscles on it, with their names written on it as well]

My posts are often very long and I realize that that’s harder to read for a lot of people. So, I decided to split my posts up if I want to tell a lot (which is usually the case). Hopefully, it will be easier to read that way. So next time, I’ll talk about my first two appointments.

Photo source