Please watch my latest vlog, about mental health and physical health updates! If you like my vlogs, please share and subscribe!
Thursday, 12 January 2017
Tuesday, 27 December 2016
Spinning Plates
I was trying to think of a half-decent title for this blog post, and "Spinning Plates" was all that really came to mind. I needed a title that described how I felt when it came to dealing with physical health problems, as well as mental health problems. I've mentioned my diagnoses before, but I'll state them here and hopefully I can explain how managing these conditions feels a lot like "spinning plates".
Fibromyalgia: I've had this since 2010 and sometimes I feel I've accepted it, sometimes I get extremely frustrated, upset, and angry at how much it limits what I can do/how often I can do it. I'm so used to pushing myself that I find it very hard to stop and pace before I cause my symptoms to flare up. Sometimes I deliberately go too far, because I find physical pain a little easier to cope with than mental pain. When I do pace, the internalised ableism kicks in, and I feel as if I'm being lazy, not making the most of the day etc. I know that pacing myself is a good thing to do, and resting is still productive as it means I am looking after myself. I just wish I could feel less guilty about it!
Hypermobility Syndrome: I'm not entirely sure when it became Joint Hypermobility Syndrome, but I know I've been hypermobile all my life. As I learn more about it, I realise how mindful I have to be when it comes to using my joints. I have multiple subluxations every day, and sometimes I have dislocations too. Having doctors finally believe me (after a physio actually seeing and hearing a joint dislocate!) has helped a little, but doesn't take away the frustration with working around limitations and not getting much support for it.
Depression: Looking after yourself is so so important anyway, let alone when you are dealing with multiple illnesses & disabilities! I really do try, but Depression zaps my energy (what's left of it, thanks to Fibro and JHS anyway!). I struggle with motivation as well. Emotionally, the most basic sounding tasks can feel like trying to climb a mountain. On my bad depression days, I barely do a thing, and then I hate myself for being "lazy". If it isn't too bad on particular days, but my physical health problems are, I then get frustrated with myself for physically not being able to do things that might help my mood a little (e.g. making a nice snack, doing some cross stitch, meeting a friend).
Generalized Anxiety Disorder: When anxiety gets severe, it can limit you so much. I could be having a day with slightly less physical pain, or even less fatigue. On this day, I may want to make the most of this by maybe having a walk, or at least getting out of the house (even if just into the garden). Anxiety can have a real hold on me however, and often it becomes a panic attack (which then makes the physical pain, fatigue etc worse!). As much as I want to be able to do stuff, I just can't. It's as if invisible arms are squeezing me tightly, the room has become unbearably hot, my head is pounding, the room is spinning, and I can't focus on anything else. I know these things are down to anxiety and panic, and that they will lessen in time, but it does not stop me from feeling them so intensely.
Agoraphobia: The symptoms I get with Agoraphobia are very much the same as with GAD, but they are of course more about situations (such as being out of the house, being in a busy place, not being able to get out of somewhere quickly or easily). If it is quiet, having a short walk can help lessen my depressive symptoms temporarily. I want to be able to do this as much as my health allows, but the agoraphobia holds me back. Even if I manage to force myself outside, if it is bad enough, I will not feel better. I will spend the whole time on the edge of a panic attack and that will be my energy gone for the day.
Obsessive Compulsive Disorder: This can affect my ability to get out of the house and cope with daily things. The meds I'm on do help calm down my OCD related anxiety a little, but on a bad day I could struggle just as much as I did before I was on the meds. Again, this holds me back and stops me from being able to make the most of low pain/fatigue days.
I hope this makes sense. There's a lot of similarities with each condition, and of course I know that mental health and physical health often overlap. For me, it feels as if they clash too! I'm trying to manage my struggles with things like anxiety with going outside and guilt from not going outside, when it occurs on a day my physical symptoms aren't too bad. On the less anxious days, I want to do more to help myself, but physical symptoms limit how much I can help myself on bad physical health days!
I guess it's about moderation and, yes, Pacing. If anyone has any tips on getting that balance right, or even if you don't and you need to vent to someone who understands, leave a comment below!
Thank you for reading.
Fibromyalgia: I've had this since 2010 and sometimes I feel I've accepted it, sometimes I get extremely frustrated, upset, and angry at how much it limits what I can do/how often I can do it. I'm so used to pushing myself that I find it very hard to stop and pace before I cause my symptoms to flare up. Sometimes I deliberately go too far, because I find physical pain a little easier to cope with than mental pain. When I do pace, the internalised ableism kicks in, and I feel as if I'm being lazy, not making the most of the day etc. I know that pacing myself is a good thing to do, and resting is still productive as it means I am looking after myself. I just wish I could feel less guilty about it!
Hypermobility Syndrome: I'm not entirely sure when it became Joint Hypermobility Syndrome, but I know I've been hypermobile all my life. As I learn more about it, I realise how mindful I have to be when it comes to using my joints. I have multiple subluxations every day, and sometimes I have dislocations too. Having doctors finally believe me (after a physio actually seeing and hearing a joint dislocate!) has helped a little, but doesn't take away the frustration with working around limitations and not getting much support for it.
Depression: Looking after yourself is so so important anyway, let alone when you are dealing with multiple illnesses & disabilities! I really do try, but Depression zaps my energy (what's left of it, thanks to Fibro and JHS anyway!). I struggle with motivation as well. Emotionally, the most basic sounding tasks can feel like trying to climb a mountain. On my bad depression days, I barely do a thing, and then I hate myself for being "lazy". If it isn't too bad on particular days, but my physical health problems are, I then get frustrated with myself for physically not being able to do things that might help my mood a little (e.g. making a nice snack, doing some cross stitch, meeting a friend).
Generalized Anxiety Disorder: When anxiety gets severe, it can limit you so much. I could be having a day with slightly less physical pain, or even less fatigue. On this day, I may want to make the most of this by maybe having a walk, or at least getting out of the house (even if just into the garden). Anxiety can have a real hold on me however, and often it becomes a panic attack (which then makes the physical pain, fatigue etc worse!). As much as I want to be able to do stuff, I just can't. It's as if invisible arms are squeezing me tightly, the room has become unbearably hot, my head is pounding, the room is spinning, and I can't focus on anything else. I know these things are down to anxiety and panic, and that they will lessen in time, but it does not stop me from feeling them so intensely.
Agoraphobia: The symptoms I get with Agoraphobia are very much the same as with GAD, but they are of course more about situations (such as being out of the house, being in a busy place, not being able to get out of somewhere quickly or easily). If it is quiet, having a short walk can help lessen my depressive symptoms temporarily. I want to be able to do this as much as my health allows, but the agoraphobia holds me back. Even if I manage to force myself outside, if it is bad enough, I will not feel better. I will spend the whole time on the edge of a panic attack and that will be my energy gone for the day.
Obsessive Compulsive Disorder: This can affect my ability to get out of the house and cope with daily things. The meds I'm on do help calm down my OCD related anxiety a little, but on a bad day I could struggle just as much as I did before I was on the meds. Again, this holds me back and stops me from being able to make the most of low pain/fatigue days.
I hope this makes sense. There's a lot of similarities with each condition, and of course I know that mental health and physical health often overlap. For me, it feels as if they clash too! I'm trying to manage my struggles with things like anxiety with going outside and guilt from not going outside, when it occurs on a day my physical symptoms aren't too bad. On the less anxious days, I want to do more to help myself, but physical symptoms limit how much I can help myself on bad physical health days!
I guess it's about moderation and, yes, Pacing. If anyone has any tips on getting that balance right, or even if you don't and you need to vent to someone who understands, leave a comment below!
Thank you for reading.
Friday, 2 December 2016
Penultimate Physiotherapy Appointment???
I did mean to write this post last Friday, but I've been struggling a lot with severe fatigue. I've not been able to get much done at all, because I've been falling asleep in the day time, and it has been very difficult to rouse me and keep me awake. I did see the GP about this recently and had some blood tests (only for B12, Folates, and Full Blood Count though?). My B12 came back low again, but the GP wants to see if I can increase it by altering my diet. If in three months it's still low, I'll be prescribed B12 tablets. I'm not completely happy with this, as my Vitamin D tends to frequently be low, and TSH tends to be high, (and neither were tested) but I guess I can wait three months and ask for more tests if I'm still having severe fatigue.
Ok, onto my physio appointment! Please read my recent post Bendy Life if you want to catch up.
My second appointment was a surprisingly quick one! The physiotherapist asked how I'd been getting on with my exercises and if I'd bought/been using the insole arch supports. I said that I'd been coping well with the exercises (with not too much pain during) but hadn't found any real improvement with my dislocating left knee. She decided to make one of the exercises slightly harder, in the hopes that it will do more to strengthen my muscles. It did hurt a bit more, when I tried it out, but not an unreasonable amount *insert cheesy joke about No Pain, No Gain here*
She also tried me with Kinesiology tape. At first, she wanted to use more conventional tape (I'm not sure of the proper name for this) but I told her about how easily my skin rips and bruises with tape such as micropore. She said the conventional tape definitely wouldn't suit me then! The Kinesiology tape suited me very well, and I've ordered some to use at home or on extra bendy days. She showed me how to apply the tape around and under my kneecap. I found it really helped support my knee, and it didn't constantly feel as if it would dislocate. Believe me, this felt like such a relief! Having to think about every step you make, in order to avoid subluxations/dislocations, is not fun!
The session pretty much ended after this! I was very surprised, as the last one was so much longer. The physiotherapist also asked if I wanted another appointment. It seemed that she wanted this to be the last session; which I found really surprising! If I remember correctly, at my Orthopaedic assessment, it was recommended that I have physiotherapy long term. I did ask for another appointment after Christmas; to give me time to see if there's any improvement. I think this might be my last appointment though! I was too taken aback to really say anything about that, but I went home very confused. I'd have understood if I had noticed a lot of improvement, but hardly a thing had changed since my last appointment!
Have you had a very short programme of physiotherapy, when you were under the impression you'd be having a long term one? Is there any reason why? Please comment below.
Resources
1. https://amysmysteryillness.blogspot.co.uk/2016/11/flare-ups-frustration-and-fear.html
Ok, onto my physio appointment! Please read my recent post Bendy Life if you want to catch up.
My second appointment was a surprisingly quick one! The physiotherapist asked how I'd been getting on with my exercises and if I'd bought/been using the insole arch supports. I said that I'd been coping well with the exercises (with not too much pain during) but hadn't found any real improvement with my dislocating left knee. She decided to make one of the exercises slightly harder, in the hopes that it will do more to strengthen my muscles. It did hurt a bit more, when I tried it out, but not an unreasonable amount *insert cheesy joke about No Pain, No Gain here*
She also tried me with Kinesiology tape. At first, she wanted to use more conventional tape (I'm not sure of the proper name for this) but I told her about how easily my skin rips and bruises with tape such as micropore. She said the conventional tape definitely wouldn't suit me then! The Kinesiology tape suited me very well, and I've ordered some to use at home or on extra bendy days. She showed me how to apply the tape around and under my kneecap. I found it really helped support my knee, and it didn't constantly feel as if it would dislocate. Believe me, this felt like such a relief! Having to think about every step you make, in order to avoid subluxations/dislocations, is not fun!
The session pretty much ended after this! I was very surprised, as the last one was so much longer. The physiotherapist also asked if I wanted another appointment. It seemed that she wanted this to be the last session; which I found really surprising! If I remember correctly, at my Orthopaedic assessment, it was recommended that I have physiotherapy long term. I did ask for another appointment after Christmas; to give me time to see if there's any improvement. I think this might be my last appointment though! I was too taken aback to really say anything about that, but I went home very confused. I'd have understood if I had noticed a lot of improvement, but hardly a thing had changed since my last appointment!
Have you had a very short programme of physiotherapy, when you were under the impression you'd be having a long term one? Is there any reason why? Please comment below.
Resources
1. https://amysmysteryillness.blogspot.co.uk/2016/11/flare-ups-frustration-and-fear.html
Friday, 18 November 2016
Flare ups, Frustration, and Fear
The Dreaded Envelope
The dreaded white envelope came through the post a couple of days ago. An ESA50 that I need to fill in and send back within a month. I had a feeling I'd be reassessed soon, but was hoping they would at least wait until my birthday and Christmas were out of the way first. Wishful thinking I guess! When I saw what it was, I became so panicky and tearful. I've been through it all before, and have horrible memories of the Work Capability Assessment and the Work Programme.
This is such a bad time for me to be reassessed. I don't know how I'm going to cope with it to be honest. If you've been following my vlogs, then you'll know that I'm having to talk about some very difficult things in the past, in therapy. This means that I'm struggling as it is. The pressure of being scrutinized and judged for daring to be too ill to work, and the possibility that I could either have my disabilities completely dismissed & found "fit for work" or I will be put in the work related activity group and possibly forced onto the work programme (or something similar), is likely to push me over the edge. I'm going to need a lot of support from my therapist and GP.
I hate the way the ESA letters are worded. They're covered in bold writing; telling you that you may be sanctioned/found fit for work if you don't do this or that. I struggle enough with letters like that, but I live with my parents, so they'd know if I was going into crisis. For a vulnerable person living on their own, the wording of those letters could have such a detrimental impact on their mental health. There is the focus on work being "good for your health" as well; implying that everyone should work, no matter how ill or disabled they are. So right from the start, you feel as if you will be found fit for work regardless.
I'm hoping I can get evidence from my physio, therapist/mental health nurse, and GP; to back up my claim. I know in some areas, GPs won't do supporting letters for ESA claims however. I've not been in this area very long, so have only been registered with this GP for less than a year. I do hope I can get some sort of evidence though.
Flare ups
I've been in more pain, much more exhausted, and more dizzy than usual this past week or so. I think the damper weather must be making me feel worse. I'm due to start my period soon as well, and find that I flare up more easily around this time. I've found it particularly frustrating this time round however. I'm finally having a type of therapy that might actually help, and physiotherapy with a physio who has one of my conditions. I had to cancel both of those appointments this week. I was getting motion sickness, bad dizziness, overheating and getting exhausted after simple things (such as brushing my teeth). I don't want to end up cancelling too many appointments, or I will be discharged. I need that extra support!
All I can do, I guess, is pace myself, rest when I need to (i.e. before I'm completely exhausted), and look after myself better. I wish I could control my illnesses, but I've tried and the best I can do is manage and work round them. Willpower does not cure chronic illnesses.
The dreaded white envelope came through the post a couple of days ago. An ESA50 that I need to fill in and send back within a month. I had a feeling I'd be reassessed soon, but was hoping they would at least wait until my birthday and Christmas were out of the way first. Wishful thinking I guess! When I saw what it was, I became so panicky and tearful. I've been through it all before, and have horrible memories of the Work Capability Assessment and the Work Programme.
This is such a bad time for me to be reassessed. I don't know how I'm going to cope with it to be honest. If you've been following my vlogs, then you'll know that I'm having to talk about some very difficult things in the past, in therapy. This means that I'm struggling as it is. The pressure of being scrutinized and judged for daring to be too ill to work, and the possibility that I could either have my disabilities completely dismissed & found "fit for work" or I will be put in the work related activity group and possibly forced onto the work programme (or something similar), is likely to push me over the edge. I'm going to need a lot of support from my therapist and GP.
I hate the way the ESA letters are worded. They're covered in bold writing; telling you that you may be sanctioned/found fit for work if you don't do this or that. I struggle enough with letters like that, but I live with my parents, so they'd know if I was going into crisis. For a vulnerable person living on their own, the wording of those letters could have such a detrimental impact on their mental health. There is the focus on work being "good for your health" as well; implying that everyone should work, no matter how ill or disabled they are. So right from the start, you feel as if you will be found fit for work regardless.
I'm hoping I can get evidence from my physio, therapist/mental health nurse, and GP; to back up my claim. I know in some areas, GPs won't do supporting letters for ESA claims however. I've not been in this area very long, so have only been registered with this GP for less than a year. I do hope I can get some sort of evidence though.
Flare ups
I've been in more pain, much more exhausted, and more dizzy than usual this past week or so. I think the damper weather must be making me feel worse. I'm due to start my period soon as well, and find that I flare up more easily around this time. I've found it particularly frustrating this time round however. I'm finally having a type of therapy that might actually help, and physiotherapy with a physio who has one of my conditions. I had to cancel both of those appointments this week. I was getting motion sickness, bad dizziness, overheating and getting exhausted after simple things (such as brushing my teeth). I don't want to end up cancelling too many appointments, or I will be discharged. I need that extra support!
All I can do, I guess, is pace myself, rest when I need to (i.e. before I'm completely exhausted), and look after myself better. I wish I could control my illnesses, but I've tried and the best I can do is manage and work round them. Willpower does not cure chronic illnesses.
Monday, 7 November 2016
Bendy Life
Last year, I had an Orthopaedic Assessment for my subluxing left knee . It ended up as an assessment of most of my joints, and I was diagnosed with Hypermobility Syndrome. I was referred on for physiotherapy (mainly for my knee) to strengthen the muscles round the joints and hopefully lessen the chance of subluxations/dislocations. I started physio in the area I lived, but this stopped when I moved out of the area.
There were a lot of things to sort out during & after the move, and my worsening health meant that getting referred for physio near my new home was on the back-burner for a while. I finally got to a point where it felt like a good time to start physio again. I dreaded the idea of having to give my life story to a stranger again; with the worry that my physical difficulties would be underestimated (which felt like the case with my previous physio!)
I had my first physio session last Friday and was very pleased with it! The physio was lovely! She was so understanding, considerate, and she listened to me. It turns out that she has Hypermobility Syndrome too! She examined me and saw how I stood, walked etc. Because I have frequent dislocations, she told me that my Hypermobility Syndrome is severe.
She asked me what I hoped to achieve from these sessions. I said that I would like to have less subluxations and a little more stability in my hips so I could walk a bit more. If I can physically go on a walk (no matter how short) then I have more chance of improving my agoraphobia. At the moment, I'm finding that my physical problems worsen some of my mental health ones.
When talking through (and getting me to try) exercises, she would listen to my concerns and notice if certain exercises were causing more strain/pain than they should. This was so different to the last physio; who implied I simply was reluctant to exercise...
As well as exercises, the physio suggested insole arch supports (as she noticed the arches in my feet are quite low) as well as kinesio tape so that my joints are less likely to pop out while I exercise.
I see her next in a couple of weeks, where I will be trying exercises while wearing kinesio tape. I've never used this before, so am interested to find out if it'll help.
There were a lot of things to sort out during & after the move, and my worsening health meant that getting referred for physio near my new home was on the back-burner for a while. I finally got to a point where it felt like a good time to start physio again. I dreaded the idea of having to give my life story to a stranger again; with the worry that my physical difficulties would be underestimated (which felt like the case with my previous physio!)
I had my first physio session last Friday and was very pleased with it! The physio was lovely! She was so understanding, considerate, and she listened to me. It turns out that she has Hypermobility Syndrome too! She examined me and saw how I stood, walked etc. Because I have frequent dislocations, she told me that my Hypermobility Syndrome is severe.
She asked me what I hoped to achieve from these sessions. I said that I would like to have less subluxations and a little more stability in my hips so I could walk a bit more. If I can physically go on a walk (no matter how short) then I have more chance of improving my agoraphobia. At the moment, I'm finding that my physical problems worsen some of my mental health ones.
When talking through (and getting me to try) exercises, she would listen to my concerns and notice if certain exercises were causing more strain/pain than they should. This was so different to the last physio; who implied I simply was reluctant to exercise...
As well as exercises, the physio suggested insole arch supports (as she noticed the arches in my feet are quite low) as well as kinesio tape so that my joints are less likely to pop out while I exercise.
I see her next in a couple of weeks, where I will be trying exercises while wearing kinesio tape. I've never used this before, so am interested to find out if it'll help.
Tuesday, 1 November 2016
Session 2: Starting Interpersonal Therapy
At the moment, I'm vlogging about my experiences with Interpersonal Therapy. You'll find my Chronic Illness playlist here . Please share and subscribe if you like my videos! I'll be back to blogging very soon, and my next post will be about starting Physiotherapy for my Hypermobility Syndrome. See you soon!
Tuesday, 18 October 2016
My Not-CBT Therapy Session
(Please see my blog posts entitled Let's Try This Again , and Let's Try This Again: Part Two to catch up, before reading this latest post).
So, the wait for therapy turned out to be much less than the 10 weeks I was told to expect! I was very surprised, but glad that I could be seen soon. I've been teetering on the edge of crisis, so have really needed help as soon as possible. The place, where I was to have therapy, was a little further away than I expected, but all slots had been filled in clinics nearer my home. Fortunately my dad could take me pretty much any time though; so getting there wasn't a problem.
I was dreading it on the day. I was under the impression (from the therapist on the phone) that I would be going through CBT yet again. This would be the 4th time, after 3 times with little or no improvement! Thankfully it turned out to be more of an assessment with a mental health nurse (who was also trained in various non-CBT based therapies). This session was very very different to what I expected, and the nurse seemed to pick up on a lot of things about me, when I spoke about various problems I have, things that've happened etc. He decided that CBT wasn't really the appropriate type of therapy for me, and that Interpersonal Therapy would suit me more. He's given me some information about this type of therapy, and I get to decide at the next session (31st October) whether I want to go ahead with it & continue with him as my therapist.
I wanted to talk about this appointment, and how I was feeling, as soon as I possibly could once I'd got back home. If you've read my Quick Announcement post, then you will know that I have now started vlogging about my chronic mental and physical illnesses. I decided to talk about this session in more detail by vlogging about it. The vlog is entitled First Therapy Session That Wasn't CBT!!! If you enjoy my vlogs, please share and subscribe!
I may write a short blog about my next therapy session, but want to vlog again to give more detail. I'd like this blog and my vlogs to complement each other, & I am hoping this works out well.
Thanks for reading, and please comment below if you have any suggestions!
So, the wait for therapy turned out to be much less than the 10 weeks I was told to expect! I was very surprised, but glad that I could be seen soon. I've been teetering on the edge of crisis, so have really needed help as soon as possible. The place, where I was to have therapy, was a little further away than I expected, but all slots had been filled in clinics nearer my home. Fortunately my dad could take me pretty much any time though; so getting there wasn't a problem.
I was dreading it on the day. I was under the impression (from the therapist on the phone) that I would be going through CBT yet again. This would be the 4th time, after 3 times with little or no improvement! Thankfully it turned out to be more of an assessment with a mental health nurse (who was also trained in various non-CBT based therapies). This session was very very different to what I expected, and the nurse seemed to pick up on a lot of things about me, when I spoke about various problems I have, things that've happened etc. He decided that CBT wasn't really the appropriate type of therapy for me, and that Interpersonal Therapy would suit me more. He's given me some information about this type of therapy, and I get to decide at the next session (31st October) whether I want to go ahead with it & continue with him as my therapist.
I wanted to talk about this appointment, and how I was feeling, as soon as I possibly could once I'd got back home. If you've read my Quick Announcement post, then you will know that I have now started vlogging about my chronic mental and physical illnesses. I decided to talk about this session in more detail by vlogging about it. The vlog is entitled First Therapy Session That Wasn't CBT!!! If you enjoy my vlogs, please share and subscribe!
I may write a short blog about my next therapy session, but want to vlog again to give more detail. I'd like this blog and my vlogs to complement each other, & I am hoping this works out well.
Thanks for reading, and please comment below if you have any suggestions!
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