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.

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











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.

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.

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!

Thursday, 13 October 2016

Quick Announcement

This is just a short post, to let you know that I've now started vlogging! A friend suggested it to me recently and, after umming and ahhing for a while, I finally decided to give it a go. I might use it for little updates or to focus on one topic at a time, I haven't decided yet. I do want to try and post vlogs regularly though. Apart from lots of furbaby videos (and a few random ones) there's an Introduction Vlog on there for now. Go check it out, and subscribe to my Amzie Bear channel if you like it!

I will of course keep blogging here, so stay tuned!

Saturday, 1 October 2016

Let's try this again: Part two

(TW: Mentions of suicide, self-harm, and abortion)

On Wednesday, I had my phone assessment with the Primary Care Mental Health team. I was really nervous on the day, and was watching the clock. The more I waited, the more nervous I got, and the more shaky I was when the call finally came. In order to prepare for my assessment, I'd gathered together all my paperwork from previous assessments and appointments. I wanted to be as prepared as possible so that I wouldn't miss anything out during the assessment. I completely overwhelmed myself, however.

Although I was extremely anxious when answering the phone, I was very glad to have the opportunity to be assessed again and talk through the things I'd been struggling with. The therapist began the assessment by asking me what sort of problems had brought me to contact mental health services this time. I found it hard to know where to start. I had so much going on in my head that I don't think I made much sense at first. I tried to prioritise the main things that I needed help with; which included how easily overwhelmed I was getting, things from the past that needed addressing, how my anxiety seemed to be worse, and the recent breakdown I had. I told him that I'd been through CBT a few times in the past and found that it didn't help much. I said that it didn't seem to fit my problems, as I wasn't able to talk about certain things in the past that affected how I am now. The therapist said that there were different types of CBT, and some did consider the past when attempting to help with the problems that the person has right now. He told me not to completely shut myself off from the idea of CBT. I reluctantly said that I would keep an open mind, but that other therapies that have been suggested to me by my last therapist and my psychiatrist were EMDR and Psychodynamic therapy. This therapist said to me that there were other therapies we could consider if I found that CBT still wasn't working for me. One therapy he mentioned was a person-centred one. He gave a brief description of what that therapy entailed, and said that this would include going through things in the past and discussing how they affected how I see the world now. I said that this sounded like the type of therapy that may suit me a little more.

He wanted to know how long I'd had symptoms of Anxiety, Depression, and OCD. He also wanted to know the obsessions and compulsions I had now and in the past. Although I was diagnosed as an adult, I'd realised that I'd had symptoms pretty much since the start of primary school. He asked (sensitively of course) what I thought had led to this. Although I struggled a lot, and was in tears for most of it, I just about managed to tell him about the bullying, and the termination I had during my first year of university. He was very patient, understanding, and non-judgmental. He gave me time to talk about what I needed to, and was kind when my mind would go blank & it took me a while to remember what I wanted to say. After this, he gave me a brief analysis of what he thought were my main things that I needed help with.

Next came the necessary, but frustrating part of the assessment; the questionnaires. He admitted that he hated them too. I guess they have to quantify some things, to see how severely a client is affected by their mental health problems. It's just such a restrictive set of questionnaires/ I may meet the criteria for Anxiety and Depression, but if there are any other mental health problems, that could be identified by asking other questions, I don't have that access to those questions.

I may have described these questionnaires before, but the first one I had was the PHQ-9 . This is to test for Depression, and the severity of it. For each question, there is a score between 0 and 3. 0 means "not at all" and 3 means "nearly every day". When responding, you focus on how often you've been experiencing (the things stated in the question) in the last two weeks.

For this questionnaire, you have a score out of 27. My score was 24; which places me in the severe category. The therapist also had to assess my risk of attempting suicide. I told him that although I frequently had thoughts, and sometimes strong urges, I'm unlikely to actively plan or carry them out because of my cat and my parents. I forgot to mention about my regular self-harming, but I guess this is something I can talk about during therapy sessions.

The second questionnaire was the GAD-7 . This tests for Generalised Anxiety Disorder and the severity of it. Similarly to the PHQ-9, there is a score between 0 and 3 for each question. Again, 0 means "not at all" and 3 means "nearly every day", and you are asked to consider how you've felt in the last two weeks.

For this questionnaire, you have a score out of 21. My score was 18; which places me in the severe category.

The third questionnaire focused on phobias. For each types of phobias described, you give a score between 0 and 8 to state to what extent you would avoid various situations because of it. A lot of my fears involve loss of control; for example, losing control of my bladder in a public place, having a panic attack etc. 0 means you wouldn't avoid the situation, 8 means you would always avoid that situation based on the phobias mentioned.

Once these had been completed, the therapist discussed with me what the next steps would be. He said that he believed I should give CBT another go, at least to tackle my symptoms of OCD. He did say that I could have person-centred therapy instead, if I still find the CBT unhelpful. I reluctantly agreed to this. At least I can have access to other therapies, instead of it being CBT or nothing. He said the wait is likely to be around 10 weeks, as the waiting list is long. I knew to expect this anyway. Before we ended the call, he made sure that I knew who to contact if I do become actively suicidal. These were the Out of Hours team, and Samaritans.

 I do feel a little more hopeful about this mental health team, but we'll have to see how therapy goes. 

Monday, 26 September 2016

Let's try this again.

After months and months of avoiding mental health services, and one GP appointment that I got too ill to follow up, I'm finally asking for help again.

It's been a mixture of reasons really. Fibromyalgia flare ups, helping my parents through various things, feeling I don't deserve help, and being too anxious to use the phone (you have to ring up and self refer to the Primary Care team).

It took a breakdown in front of my mum to push me to ask for help. It was mum who got in touch with the GP and then the mental health team to get me to stop avoiding this. I've been getting close to crisis point recently so of course it's important I get some sort of support. I've bottled up so much (and 'coping' by self harming) because I didn't want to worry my parents and I didn't want to bring any attention to myself. I knew it wasn't a healthy thing to do, but I felt that I had to do it.

After a very nervous wait, I had a callback from the Primary Care mental health team earlier today. I was shaking the whole time, but managed to give them the details they needed (contact details, diagnoses, previous therapies, demographic questions etc). They asked if I was suicidal/had plans too, and gave me some helpline numbers. I don't know if I'll manage to ring if I'm in crisis (it's scary enough even on good days!) but at least I know who to contact.

So, the next step is a phone assessment this Wednesday. It's been a while since I've had a mental health assessment, so I'm glad it'll happen even if I'm really nervous about it being over the phone. The person on the phone today was really friendly and patient with me though, and I hope the person I speak with next is the same.

My next post should be much sooner than usual, and a lot longer than this one! I'll be talking about the assessment and what the next step will be.

Sunday, 28 August 2016

I hate my skin.

TW: This post includes details of self harm. Please take care reading it. 

I pick my skin. A lot. Several times a day. I've done it at least since my teens, but it has got a lot worse in the past year or so. I absolutely hate my skin at the moment and even though it's mainly because of my picking, It also give me the severe urge to carry on picking. I've been trying to think of why I do it, what my triggers are etc. I tend to do it much more when I'm stressed, anxious, or very depressed. This can be to distract myself from the thing/s I'm stressed about, or can be as a form of punishment if I've been too anxious or depressed to do something. I also find that if I see a flaw (a spot, bit of dry skin etc) I just *have* to sort it out. I will do this for hours on end; as if I'm in some sort of trance. It's like an itch that gets worse, the more I leave it. I cannot concentrate on anything else, and all I can think of is "fixing" that flaw. Of course, it rarely helps my skin. Quite the opposite in fact. The more I pick, the worse it gets, and I have marks that I don't think are ever going to go away.

It's got to a point where I don't just use my fingers, I use pins as well. I've come to realise that this has become a form of self harm. Although it hasn't required medical treatment, I've caused myself to bleed a fair amount, and have needed to use plasters. Small parts of my body have reduced/no feeling now as well. 

I've admitted (some of) this to my parents, and think it has worried them. I try to conceal the wounds and make excuses for why I've been out of the room for so long. It is something I guess I feel ashamed of, but the more I hate myself for it, the more I do it!

I've been trying very very hard to reduce how often I do this and have so far managed up to a day with no picking. I just about managed yesterday, and I'm trying to make it two days without picking. It is so difficult, because I'm having to try to ignore those intrusive thoughts and urges. I'm trying to find ways to distract myself, by keeping myself as busy as I can. This of course isn't helping my physical health, but sometimes I have to compromise in order to help my mental health a bit. 

A while back, I bought one of those fidget toys. It was some little wooden blocks strung together with elasticated string. You could make different shapes by twisting and moving the blocks. Unfortunately, I found it didn't really help. It kept my hands busy for a bit, but it just wasn't the same. I wasn't "fixing" anything, just adjusting it. 

I've tried adult colouring books too. It helps a little, and can be a good distraction sometimes, but it doesn't require much focus so doesn't really help keep my mind off intrusive thoughts and urges. 

In order to calm my skin down a little, I've used ice cubes on the worst marks. Although it took some of the redness away, I ended up using this as a way to harm myself; by holding the icecubes on my skin until the pain was too hard to bear. 

At the moment, I'm using cross stitch to distract myself and keep my hands busy. I struggle with concentration, but on my not-so-bad days, I can focus on this and push those picking urges back a little. I game a lot as well; casual gaming when I can't concentrate for too long. 

I'm feeling so restless right now, but I'm trying to hold it together and not give in. Can I make it to two days without picking? Wish me luck, I need it!

Friday, 29 July 2016

A Review of Fay Farms Rejuvenation Lotion (Sponsored Blog Post)

Disclaimer: This is a sponsored post. I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. 

My pains have been so bad recently, and noticeably so in my knees. I've been on Tramulief Slow Release (100 mg) for a little while now and, although it really does help & lasts once it kicks in, it doesn't give the quick relief I need for my joints. I also find it doesn't really help with the stiffness either. 

I've tried topical treatments in the past and have found no relief whatsoever. A lot of them just give a warming feeling and smell strongly of chemicals. I'd heard of the benefits of CBD (Cannabidiol) oil, but was unsure whether it'd be worth the money. I'd already spent a lot on treatments that didn't work. When I was given the opportunity to try a new lotion containing CBD oil, I (figuratively!) jumped at the chance and straightaway accepted. I am so glad I did! This is my review of Fay Farms Rejuvenation Lotion.

Fay Farms have introduced a new product to their range. Fay Farms Rejuvenation lotion is a very natural product; combining herbs and essential oils for relief of joint and muscular pain. Its ingredients include magnesium, hemp oil, valerian, turmeric, and 200 mg CBD (cannabidiol) oil; which are known for their anti inflammatory and relaxation properties. 

Packaging

Fay Farms Rejuvenation Lotion arrived in a fairly large but slim bottle with a pump lid for easy application. It looks very different to other products in my bathroom, so stands out easily. The gold label and beautiful detail on the front give Rejuvenation Lotion a premium look. 

The Scent

It has quite a strong, but fairly pleasant smell. Ingredients in this product (such as jojoba and vanilla) are easily identified & give a natural scent to Fay Farms Rejuvenation Lotion. The smell lasts a little longer than I would like, but does eventually fade.

The Feel

This lotion has a lovely thick, creamy texture; which spreads well over the affected area. A sufficient amount of the product can be obtained from one dispensing. The pains in my knees have been particularly bad recently, so I decided to try the product on them for now. It takes longer to absorb than I would like, but does not tend to leave residue on clothes, as far as I have found.

Is it Effective?

Personally, I've found it very helpful! This came as a surprise to me, as topical treatments don't tend to help my pains. I'm very glad I tried it however. It doesn't take too long for the effects to kick in and it happens gradually. I found it relaxed my muscles just enough, and eased the stiffness quite quickly. I'm able to move with a little more ease; which is such a relief. I will be very likely to purchase Fay Farms Rejuvenation Lotion when this bottle runs out. 

Give it a try!

If you would like to try Fay Farms Rejuvenation Lotion, you can find it on their CBD products page: . To see other products in their range, and find out about Fay Farms, you will find their website here.

To help you with your first purchase, Fay Farms is giving a generous 10% discount plus free shipping to readers of this blog in the US! Just use voucher code Mystery when checking out.  

References:


Chronic Illness Bloggers website - http://www.chronicillnessbloggers.com

Fay Farms website
 - http://www.thefayfarm.com/

Fay Farms CBD product page
 - http://www.thefayfarm.com/p/cbd


Friday, 3 June 2016

So, what now?

Since I moved house (end of last year!) I've been avoiding sorting out referrals; mainly mental health ones. There are various reasons for this, such as the exhaustion from the move,  and other things taking priority, but I've been avoiding delving into all my mental health problems.

I've made some progress on my own, but I keep going back to square one, and I need some proper support. As you may know I did have a psychiatrist, and was due to see her soon. Her secretary said she would call back to arrange a home visit so I could then be transferred to the mental health team in the area I live now. It all sounded very simple and at the time I felt relieved. After weeks of no reply from secretary or psychiatrist, I chased them up and they'd now decided that I would have to just go to my GP and get referred to the mental health team where I live now. There would be no appointment for a meds review or to transfer me.

I felt as if I'd been forgotten about. To be honest, I've felt like that a lot of times with mental health services. I'm sort of left to my own devices, with no continuous support (even though I have frequent suicidal thoughts and self harm regularly). I could've been a real risk to myself, and no one would've known.

Anyway, I have approached my GP about referral to my local mental health services. I told her that the whole thing had been really confusing and I didn't know if I'd be getting the therapy that had been suggested. Unfortunately the GP didn't know much about different therapies, so she upped my Sertraline dose; based on the fact that my Depression score was still high (21 I think?). It turns out that I can self refer to the primary mental healthcare team; who will then refer me to the appropriate service. I have a feeling they'll just try and get me to go through CBT all over again. If they do, I'm very tempted to tell them to forget it. That may be the depression talking, but I'm so fed up of getting so far, being built up with promises of various services, and then it all being taken away.

I may have mentioned this before, but I've been really confused about what my actual "official" diagnoses are. My GP showed me a letter from my medical notes (possibly the psychiatrist one?) and I noticed it said Moderate Depression, Anxiety, & Agoraphobia. The contents of the letter mentioned "symptoms of OCD" too. I didn't get chance to see more of the letter than that, but it kind of annoyed me that I'd been told one thing (i.e. the psych agreeing that I do have OCD) and another thing had been written down. It makes me wonder if other things I've been told, haven't made their way into my notes either? For example, the two therapies that were suggested to me (EMDR, & Psychodynamic therapy). I really want to get a copy of my medical records, but keep forgetting to ask. I just want things cleared up! I feel as if I'm being kept out of the loop so to speak. It reminds me of the time I'd been under the impression I had an M.E. diagnosis, but my notes said "Anxiety Disorder".

Back to the point; self referral. I have to ring up to self refer, so it's going to take more time for me to build up the courage for that. It's taken long enough for me to be completely honest and open with mental health staff, so it feels as if I'm back to square one!

Have you found yourself very lost with mental health services, and whether things suggested to you (diagnoses, therapies etc) were actually written down in your medical notes? I'd be very interested to hear how similar my experience is to others'.

Monday, 9 May 2016

"If you can do X, then you can do Y"

The above phrase, and those similar to it, really piss me off. Usually X and Y are quite different things, and the assumption that the ability to do X makes Y possible too, is so simplistic and just plain inaccurate. This kind of belief seems to form the basis of disability assessments, and ignores how different situations lead to different responses and abilities from the person (trying to) cope with them.

Here's a really obvious example : "If you can type on social media, then you can work". Yes, typing is a task done in many jobs, but being able to type a few words in response to acquaintances online isn't the same as concentrating for hours on tasks involving typing, and meeting the targets that employees are often set. In such a job, it's likely you'll need to communicate with other members of staff, fetch and carry things, attend meetings, and use the phone amongst other tasks. So no. It's not just typing.

Another one would be the assumption that, if you can cope with one group situation, you can cope with every group situation. Again, other things need to be considered. How big is the group? How far away is the session? Can the person always get transport there/if they need someone to accompany them? Is the group situation a formal or informal one? Can the person leave if/when they need? What facilities are there (toilets, drinks facilities, disabled facilities etc).

I have various anxiety disorders that can severely affect what I'm able to do. Different environments and situations can have a big impact on me as well. On a good day, I may be able to meet a couple of friends in town for coffee (as long as I can get transport from my dad or one of my friends). It has to be close friends who understand that I struggle, and are patient with me. They have to know that I need to be in the quieter areas of town, have places to sit down, and they need to be ok with it if I'm struggling too much and need to go home.

This doesn't mean I could cope with *any* group situation. A while back, I was referred to the Expert Patients Programme to help me manage the combination of mental and physical problems that I have. The content of the programme sounded interesting, and at the time I was feeling a bit lost as to how to cope with everything. Unfortunately, the thing that stopped me taking part was the fact that it was a group programme. I knew that everyone there would be in a similar boat to me, and that the staff would be understanding if I needed to leave, but this didn't stop me from being far too anxious to go.

I understand the need to apply things to different situations, but there are so many other things to consider. For lack of better phrasing, if someone can do X, then that only shows that they can do X. Y may be impossible for them. Please believe us, even if you can't fully understand the complexities of our health problems.

Wednesday, 6 April 2016

More than a pet

Since my last post, there's been some changes in my life. I always promised myself that if I moved into a bungalow, where the landlord allowed pets, I would get a cat. I've had one before, and found that this helped my mental health a little.

For me I find it's having someone to look after, some responsibility. It's more than a distraction. It's that feeling of being needed I think. Knowing that you've given a loving home to your cat is of course a big positive thing too.

The cat I have now is so affectionate. His name is Billie, he's my little shadow, and I love him to bits. He can be a little terror sometimes, but it's all worth it. Physically, it's taking its toll on me, but I don't really mind. Mentally, I feel that my general anxiety isn't as bad.

I'm having to push myself more right now anyway. My dad's physical health has worsened, and he will be having his first knee replacement tomorrow. He is due to have another replacement of his other knee too, but I'm not sure when that will be done.

I did want to say my mental health overall was a little better, but it seems I've had a relapse with the depression. I think a few things may have triggered it, but it can be hard to pinpoint. I feel as if I'm just about holding on right now. I'm having times where I feel numb, times when I'm very self loathing and guilt ridden, and times when I just feel *wrong*. I don't feel comfortable in my own skin.

I'm really hoping that this is just a bad patch that will ease soon. I'm waiting for a call back from my psychiatrist to arrange a meds review, so will have to mention this to her. I do need to get some support from mental health services in the area I live now, but I'm very confused as to what's available. I also don't know if I'm ready to do any sort of therapy just yet either.

I wish I had more to say in this post, but I'm finding it hard to find the words. I'm struggling, and I think it's taken a little while for me to realise that. I'm going to try the self care thing, cuddle Billie cat, and get what sleep I can. Thanks for reading.

Friday, 26 February 2016

A Review of MedNexus: A more accurate search engine for medical information.

MedNexus is a search engine; specifically designed for medical information. It began as a website only accessible for medical professionals, but has now been made available for patients. What sets it apart from other search engines (Google, for instance) is that it only displays accurate and reliable information. The user does not need to sift through pages of irrelevant information in order to get the answers they need. As a chronic illness blogger, I like to keep myself informed on various things to do with the medical conditions that I talk about; whether it is how the condition is diagnosed, treatments available, new research developments, or anything else that may be useful for myself and my readers. I decided to test the MedNexus website, to see how well it delivered on its promises.


Home page

The layout of MedNexus' home page is a very clear one; with easy to read sans serif font. The search box is right in the middle of the page, and I find my eyes are drawn to it straightaway. If you want to go straight to common, chronic, seasonal, or recently searched images, suggestions are available on the same page. They are clearly laid out and organised into columns.

As you scroll down, there's a short description of what the website does; i.e. its purpose. It also states why it is the ideal search engine for medical information specifically.

 "For all levels of expertise". This quote implies that there are different ways you can search; depending on what you need to find. It shows how this search engine can work for you; regardless of your level of expertise.

The information on the homepage is laid out in a clear, concise way. It is separated into small, easy to read paragraphs and columns; with a clear subheading for each.


Testing the search facility

I decided to try out a general search then a more specific search, to see how easy it would be to get the exact information I desired. As you may know, one of my medical conditions is Fibromyalgia. I wanted to see how accurate the results would be, if I searched for information on this.


General search

To start off the search, I simply typed in "Fibromyalgia". I found that as I began to type, a drop down menu was displayed; giving search suggestions. Some of these suggestions included "What is Fibromyalgia?", and "How do you treat Fibromyalgia?". I found this a useful feature, as it allowed me to narrow down my search even more; so was more likely to result in quickly finding the answer to a particular question about the condition.

The results could be ordered by relevance or most recent. They are also categorized into "Health topics", "Published research", and "Forum discussions".


Specific search

For this search, I typed in "What are the risk factors for Fibromyalgia?". The same categories as the general search were displayed in the results. The first result I came across was entitled "Fibromyalgia causes"

Looking around the results page, I noticed the left hand side displayed sections entitled "Common risk factors", "Previous searches", and "Explained". I found that these broke down the results and explained them in a less scientific way.


Other links

Other links available on each page include "Home", "About", "FAQ", "Blog", "Privacy", "TOS", "Contact", and links to MedNexus' Facebook and Twitter pages.

I was disappointed to find that when the Facebook or Twitter link is clicked, it opens in the same tab. This could be an inconvenience for people who want to keep a particular page open on the main site. It would be better if these links opened in a new tab or window by default.


Overview

Overall, I find this search engine a very useful one. It cuts down the time taken to search for the information I need, and I do not have to pore through medical jargon in order to obtain accurate and informative answers. On the whole, this appears to be a fairly accessible website; in terms of its clear layout, the font it uses, and how it can be navigated. I am very likely to use MedNexus in future; as I feel it meets my needs much better than other search engines.


What do you think?

MedNexus are looking for feedback, and suggestions on how they can improve. They would like you to complete this short survey  to share your experiences on this. I recommend giving this website a go, and seeing if it works for you!


Resources

1. MedNexus Homepage: http://www.mednexus.io/

2. MedNexus Facebook page: https://www.facebook.com/mednexus.io

3. MedNexus Twitter page: https://twitter.com/med_nexus

4. MedNexus Survey: https://www.surveymonkey.com/r/2D5ZR58

Thursday, 18 February 2016

We Are Struggling

I seem to be in a constant daze right now, and I'm getting frustrated that I'm unable to concentrate much. There is so much going on, and so many worries, that I'm struggling to cope with it all.

Both my parents and I have various long term illnesses and disabilities. Mum and I can't work, and it looks as if my dad may have to consider giving up work soon too. I feel so guilty that my dad has to do so much around the house. I do try so hard to do more, and I'm nearly always pushing myself too far (out of necessity!). It's getting to a point where we are worrying about the future. How will we manage around the house? Can we afford to keep up with bills? Will any of us be able to do some sort of work?

We have appointments coming up that may/may not provide answers; but in the meantime we are left trying to figure out what kind of support we can get (social care, benefits etc). If anyone thinks a life on benefits is an easy one, they seriously need to sit down and listen to people's experiences. It. Is. Not. Easy.

My parents, friends, and my boyfriend are all so supportive and understanding of my health problems. I don't know what I'd do without their support. They see/read about my good and bad days, so mostly understand how much I struggle and why I'm not able to work. I so wish that certain other relatives could understand that too though. I'm so tired of being asked if I'm back in work yet, why can't I do *insert completely unreasonable job here* etc. They seem to believe that I will recover at some point, and the idea of me never getting better seems impossible to them. I'm sick of having to explain over and over. It's taken me a while to get to a point of acceptance, and I still have times where I get so angry, frustrated, and upset that nothing is improving. I'm just trying to manage the symptoms I'm able to as best I can, and do what I can to enjoy life. That is my way of coping. Of course I read up on any new research I come across, but I need to be realistic and accept that right now all I can do is try to manage my conditions.

Support from loved ones is so important. Educate yourself, listen, do not judge, know that you may not fully understand but you need to accept what we are telling you. It is hard enough to deal with the daily struggles of having a chronic illness.

You may have noticed that I now have a donate button on my blog. If mum doesn't get any more help from her current specialist, we may have to travel to a hospital with more facilities, funding for new treatments etc. This will of course mean more expenses, and I'm not sure how we could come up with the money. I'm terrible at asking for money but I may need to soon. In return, I intend to blog more often and if there's anything in particular you'd like me to write about, give advice on etc, then leave a comment.


Sunday, 24 January 2016

Big Changes

It's been a good couple of months since my last post, and I did mean to talk about my progress with the physiotherapy sessions! Truth is, there have been some big (and quick!) changes recently.

My parents and I moved house at the end of last month. Thanks to the letting agent rushing us along, we had less than a month to confirm we wanted the place, come up with deposit, and move in. Even without all of our disabilities, this is a very stressful thing to do! We are still surrounded by boxes, but we are much happier in this new place. It is easier to get round the house, the area is flatter, and the shops, GP surgery etc are nearer. It is a much quieter area too.

I only managed to have one physio appointment before the move, and am planning to ask to be referred to the physio place next door to the new GP's. Hopefully the wait won't be too long. I just want to be able to do a bit more (especially with my dad's health worsening).

The prospect of so many changes has been very daunting, but I'm getting a bit less panicky about it now. Things such as changing doctors, contacting various companies (including the Jobcentre eep!) to change address, the mental and physical exhaustion (not to mention the extra pain) from the move itself, have been very hard to cope with. So many things to consider, my mind has been racing. It is a change for the better, but it has involved pushing myself to my absolute limits in order to help out as much as I can.

Thankfully some of my uncles helped with the move itself. We had removal people come too. Without them, I don't think we'd have managed it!

Since my last post, I've noticed new and worsening symptoms. I put some of it down to overdoing things, but other symptoms have just been strange. I have a couple of nurses appointments, but I do need to make a doctor's appointment at some point. I did mention them to my previous GP, who has referred to them in my notes (hopefully). I'm finding that nearly every time I move my head, especially if turning to the left or right, I get a huge wave of dizziness. At the same time as this dizziness, I get pins and needles as well as weakness in my right hand. This has caused me to drop things suddenly, and has really started to bother me. My co ordination has been off too, and I'm tripping over more often. Now and again, when I get the dizziness, I feel & hear a sort of scratching in my head. It's very unnerving! This may be unrelated, but I'm getting more headaches & my eyesight is getting worse too.

As for the physio appointment, it went pretty well. There were a couple of things I wasn't happy with, but generally I think they understood the kinds of problems I had, and took that into consideration. I've not been able to keep completely to the exercise programme (the move, flare ups etc) but it is at least doable.

I'm sure there were more things I wanted to mention in this post, but I think I'll have to leave it here. I do want to blog more often. I've even wondered about vlogging, but I don't think I could cope with the mean comments.