Am I Ready?

(TW: Mentions of Self Harm and Overdosing)

Recently I've been thinking about where I'm going in life. There's a lot I want to do, but my health either won't allow it, or causes me to struggle to do it. If this is the first post you've read by me then here are my diagnoses:

Fibromyalgia
Joint Hypermobility Syndrome
Overactive Bladder Syndrome
Irritable Bowel Syndrome
Borderline Personality Disorder
Obsessive Compulsive Disorder (although I'd say this is very mild these days)
Depression
Generalised Anxiety Disorder
Agoraphobia

Some of these illnesses aren't as bad nowadays, but others can be unpredictable. After trying different medication, I've come to accept that this is probably the best my health will be for the foreseeable future. So, what do I do with my life?

I've always been an ambitious person, and I do put a lot of pressure on myself to achieve things. This means I tend to do too much at once, or throw myself into things without considering pacing myself. I want more out of life than I'm getting right now though.

I've considered studying again, but doing it with the Open University so I don't need to travel. I looked into a Masters in Psychology. I meet the entry requirements, and I could get the finance I need, but the only thing I can't do is afford the £2000ish required upfront before the loans are paid in. I want to save up for this somehow, but I don't see how I can save much at all while on benefits (they do not stretch far!)

I've considered working again. It should mean more income, and I could hopefully keep my PIP (if the assessment goes well, as I'd have to report a change in circumstances). Could I manage working though? Even the most basic-sounding office job requires sitting up for hours on end (I often have to lie down), remembering a lot of information, possibly walking to different departments, answering/making telephone calls (I'm not as bad now, but still have phone anxiety), bending and reaching shelves (which I can do, but it's very painful) etc. Even part time, I'd be doing this about 5 days a week. Is it worth compromising my health? How many times would I have bad days, and need to call in sick? What about the days when my anxiety disorders give me panic attacks, my depression causes me to need naps throughout the day, or my BPD causes me to feel such self hatred that all I want to do is harm myself? It's a constant battle, and with the (lack of) support I have available for both physical and mental illnesses, I don't see much changing. The more realistic option would be a home based job, but there's not a lot around that offer regular work that would pay enough for me to live on.

I want to move out before I turn 30 (I'm 28 right now), but I don't know how I will manage on my own. Last time I planned moving out, the stress put me into crisis, I overdosed twice, and even now I still have urges. There's also finances to consider, how I would physically cope with running a house by myself, and how my benefits would be affected because of me having to cope by myself. I can't live with my parents forever though.

I went to a family wedding very recently, and one of the usual questions came up from a certain family member; "so, what are you doing these days?". I mentioned that I blog and I vlog sometimes, but of course what they wanted to know was if I was working yet. The disappointment in their eyes when I said "no" was quite hurtful. I quickly followed this up by explaining I'd been thinking about studying or working. They didn't seem satisfied though. Apparently Psychology isn't the right path to go down for work or study. I should be doing Computer Science instead.

As well as working *and* studying, they expected me to take up driving lessons again (I did learn 10 years ago, but failed my test and couldn't afford it/lost my confidence afterwards). They also wanted me to travel to see them more.

It was very hard to explain why I couldn't do some, let alone all of these things. I also felt I wasn't being listened to, I was just being told what I *should* be doing. The thing is, this family member knows at least some of the illnesses I have, yet they don't seem to realise that chronic means lifelong, and that these illnesses affect my daily life significantly.

This has been playing on my mind a lot recently, and I feel like I'm achieving nothing in my life right now. I spoke to a few friends about how I'd been feeling and got some great advice for testing how I'd manage with the workload of a job, as well as some advice about driving. To my surprise, a lot of people my age and older don't/can't drive. The only reason I might take up driving again is if I have children in the future. Apparently, I may have to check with DVLA as to whether (with my conditions) I'm actually allowed to. Honestly, I don't want to drive. It makes me panic, I don't feel safe or in control, and I don't think it's worth feeling this way. I always felt like I had to learn though, for my family if not myself. To be told by a friend that I don't ever have to drive if I don't want to, was really helpful though.

Right now, I can't say I've decided on anything. I'm looking at job vacancies, but I'm also considering whether I'm ready or not. Studying will have to wait, unless I do some free short courses. Driving is something I don't want to think about right now, and I guess moving out will just have to wait until I'm financially more secure (whenever that will be).

In the meantime, I have to look at the little achievements, one of which will be finishing this blog post!

Do you have a Chronic illness (physical and/or mental) and struggle to work/can't work? What parts of your job do you struggle most with? What are your thoughts?

Going Abroad with Chronic Physical and Mental Illnesses

Last month, I went on holiday to Gran Canaria, with my parents. As a person with multiple mental health, physical health, and mobility problems, the thought of travelling abroad can be quite daunting and nerve wracking. Will I remember everything I need to pack? How would I be able to get across a large airport, when I can't walk far at the best of times? How will I keep myself calm? Will there be toilets available nearby? How can I plan my holiday to make sure I'm not overdoing it every day? These were just a few worries that I had. Below, I explain how I eased or solved these problems.

Packing:

About a week before I was set to go, I made lists of things to pack. I wanted to ensure I would be able to keep as cool and comfortable as possible.

• I picked clothes that could mostly be slipped on, with no fiddly fastenings to deal with.
• I made sure I packed extra medication (including extra pain medication) so that I definitely had enough for the holiday.
• To keep myself cool (as well as for easily removing makeup!), I packed a full pack of face wipes. 
• I packed travel size bottles of shampoo, shower gel, moisturiser etc. These are useful for keeping the luggage weight below the allowance, but also are easier on achy arms. There will be days where washing/showering is a struggle, so light products are helpful.
• Dry shampoo! I usually try to shower every other day, but sometimes I have to miss a few days, so dry shampoo is absolutely wonderful for ensuring my hair stays relatively fresh and clean.

At the Airport:

There are various things to consider, when at the airport, especially when you are chronically ill (physically or mentally). 

• It is important to book special assistance at least 48 hours before you are due to travel. 
• As soon as you arrive at the airport, find OCS for special assistance. They can help with getting across the airport and through security, as well as boarding the plane and even getting you to your seat (using an aisle wheelchair) if needs be. You can use your own wheelchair, if you have one, or one will be provided for you. There may also be mobility scooters available if you'd prefer to use those. I flew from Birmingham airport and found OCS opposite the Spar shop in departures. Make sure you have your passport and boarding ticket to hand, to show when asked. 
• This link will give you more information about special assistance at Birmingham Airport specifically. For any other airports, there should be information about disabled facilities and special assistance on their website.

On the Plane:

• Ask for assistance, if you need help with putting your hand luggage in the overhead locker. Airline staff are there to help!
• I find it's helpful to have anything you need for the flight to hand (maybe in a handbag if it fits) so that you won't need to get to the overhead locker and search for your bag amongst the others.

Arriving at your destination's airport:

• It's likely that passengers will need to alight the plane via the stairs (unless you're lucky and a tunnel is ready!) An ambilift will be available, however, for passengers needing special assistance.
• You will need to wait until everyone (not needing special assistance) has left the plane, before assistance and the ambilift will be available. This may take a little while, so it's best to remain seated until you see special assistance staff.
• If you have checked in your own wheelchair, it may be the case that it will arrive on a different carousel to your suitcase/s. At Las Palma Airport, the wheelchair arrived on the last carousel to the right. We weren't made aware of this beforehand, so had a bit of a panic before a member of staff advised us!

Transfers from the airport to your destination.

• Coaches can be a nightmare to get onto; with large steps and rarely any toilets. The amount of stops they make can increase the journey time by a lot as well. I would suggest booking a taxi. It pretty much halves the journey time!

At your destination

• I know it's tempting to plan to do a lot on holiday (especially if there's lots to do/explore!) but consider what makes you flare up. As you would at home (when having plans for days/nights out), rest up as much as you can, before doing anything potentially flare-inducing. Most hotels have areas near reception where you can relax, so keep that in mind if the cleaner needs to access your room. 

Are there any other tips you would give for fellow spoonies? Comment below!

Resources

https://www.birminghamairport.co.uk/at-the-airport/terminal-facilities/special-assistance/

A Review of Resonant Botanicals Qi of Calm Lotion (Sponsored Blog Post)

Disclaimer: 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.

I suffer from multiple anxiety disorders (including Generalised Anxiety Disorder and Social Anxiety Disorder) and find that I often need something to calm my nerves quite quickly. I get the most anxiety when in busy situations particularly. In the past, I've used Diazepam, which has been effective for anxiety, panic, and sleep, but I can only get this on prescription when close to/in crisis. This leaves me without adequate treatment when panicking or suffering insomnia due to anxiety. I did want to try something more natural, just to see if it would help. To be honest, I take enough medication and would rather not take any more! I was given the opportunity to try out and review Resonant Botanicals Qi of Calm Lotion, and decided to give it a go.

Resonant Botanicals Qi of Calm is a lotion, combining herbs, essential oils and green tea, in order to help with anxiety and sleep. The combination of herbs, including lavender, skullcap, and ashwaganda, works to protect against stress and maintain an emotional balance. Essential oils, including Frankincense, Chamomile, and Bergamot, help with relaxation. Finally, green tea contains an amino acid that is also said to promote relaxation.

How to use: The lotion works by being applied to certain areas of the body which are said to be associated with balancing emotions and promoting a sense of calm. Rub in a small amount of the lotion on the left side of the abdomen, (just below the ribs), on the neck below the chin, and the bottoms of your feet. 

The Bottle

Qi of Calm Lotion comes in a fairly large silver bottle, with a pump dispenser. Directions for use are clearly displayed on the left side, and ingredients on the right side. The lotion is very easily dispensed, and one dispensed amount is more than enough to apply to all of the points recommended.

The Scent

The lotion has quite a herbal scent; which is quite pleasant. I find the scent itself quite calming, and believe this is probably partly how the product works. Personally, I feel the scent lasts a bit longer than I would've liked, but this is purely subjective. 

The Feel

The texture is soft; with not too thick or thin creamy substance. The lotion spreads very well, so only a small amount is needed. One bottle should last you a while. 

Is it Effective?

I've not noticed a significant improvement in my sleep, but I do find this product has an immediate calming effect. I think it is best to use it shortly before bedtime or any other time you need to feel calm quickly. 

Give it a try!

If you are interested in trying Qi of Calm Lotion, then you can find the product page here . I do recommend giving it a try, it is definitely becoming part of my daily regime!


Resources:

Chronic Illness Bloggers network: http://chronicillnessbloggers.us12.list-manage1.com/track/click?u=f454aec32953c83c5884455f5&id=cb55a11487&e=0c4f860658

Resonant Botanicals Qi of Calm product page: http://resonantbotanicals.com/product/qi-of-calm-for-anxiety-relief/

Resonant Botanicals website:  http://resonantbotanicals.com/

Good Day vs Bad Day

 Good day

The above picture is how I usually look on a good day.

On a good day, I'll wake up in the morning; feeling like I can get through the day. My fatigue is bad, but not unbearable. It will take me about 15 mins to get out of bed and, once the dizziness is gone, I can go to the bathroom and brush my teeth. I will rest after this, and have a wash or shower once my pain meds have kicked in. The pain medication does not completely rid me of pain, but it makes me much more functional than I would be without it. 

I will need to rest, before getting my breakfast, and rest again, before drying my hair. After this, dressing, and makeup, I will have just enough energy to leave the house. On a really good day, which is rare, I will meet a friend for lunch. Anxiety means that I will need to be picked up by them, or given a lift by my dad, but the main thing is that socialising at all is possible. 

Once I'm home, I will rest for the duration of the day; having a few hours nap in the late afternoon if I'm able to sleep. Tea will be something easy to prepare/cook, or it might be a takeaway.

Bad day

The above picture is usually how I look on a bad day

My bad days tend to be very bad. I'm in a lot more pain, pain meds won't touch it (even though I will need to take more than on a good day). I'm dizzy, headache-y, shaky, nauseous, and absolutely exhausted. I will get up in the morning (my cat, Billie, demands it!) but it will take me at least double the time as a good day. I will struggle to stay awake through because of fatigue, but I will struggle to sleep, because of pain and nausea. I won't have the energy to shower or wash. I will make it to the living room for a coffee, brush my teeth after a rest, and "wash" myself with face wipes after another rest. Breakfast will be anything I can grab; such as an apple. It'll have to be something light. 

I will struggle to brush my hair, and I will find the comfiest, loose clothing I can find. The Fibromyalgia makes my skin very sore (as if I'm burnt and bruised all over), so I have to think about the tightness and the material in the clothes I wear. I will take my laptop into the living room, and try to concentrate on a programme, casual game or video clips. My mood will be low, because I'm not able to do much at all. I will feel fed up and I'll be likely to isolate myself from others. 

I will stay sat up for as long as I can, and then will go back to bed until teatime. I may be able to nap, but I'm very unlikely to feel much better for it.

Tea will be a takeaway, and my dad will have to wash up, as standing for more than a few minutes will make me so dizzy, I'm very likely to fall. 

-------------------------------------------------------

Most of the time, my days are something between good and bad. I'm able to manage basic things, such as personal hygiene and preparing simple meals, but things like housework, socialising etc are extremely difficult or impossible. I manage my symptoms by balancing rest with trying to keep moving and doing my physio. I do this to lessen the chances of my joints seizing up, and also for general health. 

How do you manage the symptoms of your chronic illness/es? Do you have any hints and tips, that you  would like to share? Comment below!

Dear Distant Friend

I'm writing this whilst feeling very low and forgotten. I know I shouldn't dwell on the past, but it's hard to let go of old friends when they drift away. It's hard because the memories don't go, especially the memories of times you've been there for each other through some really difficult stuff. I can't just forget you, as if you never mattered. Because you really really did.

There could be many reasons why we drifted away, but please don't let it be because I got ill. All I wanted was to be believed and supported. I can't expect you to fully understand (although I really would appreciate you trying to) but when I cancelled plans, please believe me when I say it's because I wasn't well enough to meet up. I would never cancel because I can't be bothered. I loved the times we spent together and I get frustrated with myself for being ill (even though I know it's not my fault).

I miss the closeness we had. I miss how we'd confide in each other and be there for each other, through good times and bad. I wish I could switch off my feelings, because they are so painful, but I can't

One day, I hope I'm able to let you go if we're never close again.

"Not really disabled"

The other day, George Freeman (Theresa May's Policy Chief) gave some very insulting and trivialising comments about anxiety disorders. You'll find the details in this article . It seems he believes that those with anxiety disorders are "not really disabled". Apparently all we do is sit at home; taking pills.

After a lot of (very much deserved!) criticism, he responded with a feeble non-apology; where he expressed "regret" that people were offended. Now I do understand that he has had an anxiety disorder in the past & I would never invalidate his experience of that. I do think, however, he needs to educate himself on various anxiety disorders. He may then learn that the symptoms can vary in severity, are complex, and can be very debilitating.

Disability is officially defined in the Equality Act 2010 as this:

"A person (P) has a disability if-

(a) P has a physical or mental impairment, and
(b) the impairment has a substantial and long-term adverse effect on P's ability to carry out normal day-to-day activities."

I cannot speak for everyone with an anxiety disorder/s, but here are the ones that I have and how they affect me.

Agoraphobia

I get very anxious about leaving the house; especially if there are people outside. To travel anywhere, I rely on my dad driving me. I get far too anxious to take public transport, and can't even take a taxi on my own. I can't manage group situations where I have to stay in the room/it'd be considered rude to leave suddenly (such as a class or meeting) and have to be near the toilet or exit if I'm in a restaurant/cafe etc.

Last time I managed to take a train by myself (years ago), I had panic attacks and had to wait for a later train than the one I'd planned to take. I felt very nauseous, dizzy, shaky and sweaty for the entire journey. Once I arrived at my destination, I was physically and emotionally exhausted. I found it very hard to focus, and when I had to change trains, I ended up lost for an hour and almost in tears at the train station. It's a good job the friend I was meeting was a patient one! In order to get home, I had to get my dad to pick me up (the journey takes over an hour by car).

Obsessive Compulsive Disorder

I've had OCD since childhood, and have tried hard to hide my compulsions. On a bad day, it stops me from leaving the house. It makes me irritable, snappy, and has caused arguments in the past. I take much longer to do things than I should, and am often late for appointments because I've had to complete compulsions, or repeat them until I am "reassured" enough to leave the house. This condition makes me feel trapped and, when I did work, it caused me to miss meetings and compromised my performance at work.


Generalised Anxiety Disorder

I don't react well to changes in plans. I need to know what to expect, Usually, my anxiety flares up in response to things, but I do find that I can randomly panic and not know what has set it off. I get panicky about hypothetical situations, and cannot just wait to deal with a certain situation when it occurs. I tend to think 10 steps ahead of myself, and think of the worst case scenario. I will dwell on potential problems; even more so if I cannot think of a solution.

I find I get very paranoid as well, and I worry a lot about people's opinions of me. I worry about losing friends and look for cues that they may be annoyed at me or drifting away. I also am constantly asking for reassurance.

Phone Phobia

Recently, my phobia of this has lessened and I can now cope with making some phone calls. I still find that I get very nervous when receiving phone calls though, and most of the time I will leave it to go to voicemail. I worry about not knowing the answers to questions I may be asked on the phone. I also worry about not having details like reference numbers ready when needed. I often mishear things and get very anxious (panicky even) if I have to keep asking the other person to repeat themselves. When I worked, I had customers react angrily over the phone because of this. I would avoid answering the phone in the workplace, and have been told off by my manager. I think this contributed to decisions not to carry on my temporary contract too.

I cannot think of a job where you are not expected to use a phone, leave the house, go to meetings, cope with changes, be punctual, have good attendance or be timely with tasks. Even without my other mental health and physical health problems, I highly doubt I could manage work of any kind.

So yes, George Freeman, I may sit at home and take pills but there's so much more to anxiety than that, and yes I am "really disabled".

    

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

      2. http://www.webmd.boots.com/healthy-eating/guide/vitamin-b12-deficiency

      3. http://patient.info/health/folic-acid-deficiency-anaemia

      4. http://patient.info/health/full-blood-count-and-blood-smear

      5. http://patient.info/health/vitamin-d-deficiency-including-osteomalacia-and-rickets-leaflet

      6. http://patient.info/health/thyroid-function-tests-leaflet

      7. https://amysmysteryillness.blogspot.co.uk/2016/11/bendy-life.html

      8. https://amysmysteryillness.blogspot.co.uk/2013/11/my-weird-kneeleg.html

      9. http://physioworks.com.au/treatments-1/kinesiology_tape

     10. https://amysmysteryillness.blogspot.co.uk/2015/06/finally.html

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.

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.

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!

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!

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.

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 here . You can also find other Fay Farms products on the CBD products page of the Canna Tree House website.

References:

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

Fay Farms Rejuvenation Lotion page - https://www.cannatreehouse.com/products/the-fay-farm-rejuvenation-cbd-lotion

Canna Tree House CBD products page - https://www.cannatreehouse.com/collections/cbd-products

"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.

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.

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

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.

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.

Exhausted

After months of trying to contact our landlord to get the tiles sorted in our bathroom (they were cracked and falling off), he finally sent someone round! I knew it'd cause some disruption to my sleep pattern, but I didn't expect it to be quite so bad (silly me).

Over the past week or so, I've had to get up and dressed before 8.30am each day. I've not been getting to sleep until 5am on average, so have been struggling so much on so little sleep. I decided I'd get up and dressed, take my meds early and maybe try to have breakfast before going back to sleep for a few more hours. It's been difficult, because of the hammering, drilling etc noises in the bathroom, and my anxiety about having a stranger in the house. I've been drifting in and out of sleep, and have felt even more exhausted than usual. I feel like I've lost so many days, because I've just not had the energy to do much at all. Even conversation has been too much for me, as I've not been able to process well what is being said to me. I doubt I've made much sense when I've replied either.

Thankfully today has (hopefully!) been the last day of this disruption, so I'm hoping I'll be able to catch up on sleep soon. I never feel rested after sleeping (the joys of Fibromyalgia!) but having my, already terrible, sleeping pattern being disrupted, puts me in a whole other level of exhaustion.

Just when you think a symptom (such as fatigue) can't get any worse, it always manages to surprise you!

Referral and Mental Health Updates

Not a huge amount has happened recently. If I'm honest, I've felt a bit ignored by doctors, therapists etc.

In a way, I've preferred not having therapy at the moment. For many reasons I suppose. Sometimes it's because I've felt able to try and do things on my own. I felt as if things were do-able. Other times, I've not felt ready to go back into therapy. I suppose I've wanted to be left alone (which is strange; considering how hard I've tried to get more support!)

Maybe I worry too much will be expected of me? I'm trying to do things at my own pace, and accept that it's going to take a while. Even on days where I'm feeling more able to go out of the house on my own (for example), my physical health vastly limits what I can do. It feels like a balancing act.

(TW meds & self harm) I'm now on 150mg Sertraline a day, and it seems to be the right level for me right now. I'm having less crises, and even have days where I don't feel strongly suicidal! What I am doing more of though is self harming. It took me a while to realise that it is a form of self harm. I don't want to go into details about it. I tend to do it for different reasons, and I think that it has become a compulsion as well. I've been trying to find distractions, even buying one of those fidget toys on Amazon, but once I start, it is extremely difficult to stop.

It's been 3 months since I was sent a referral letter for physiotherapy. My original post about the Orthopaedic assessment is here . The letter told me to ring a number, and give my name, hospital number, and any dates I'd be unavailable for an appointment. So I rang. The automated message told me to press 1 to book an appointment. I did so, and was told to leave a message with the details they required.

I finally got up the courage to ring the hospital to ask why I hadn't heard anything yet. It turned out, that they hadn't got the message, and I was supposed to wait to speak to a receptionist to book the appointment! I wish this had been stated more clearly in the letter. I also wish they'd sort the damn phone system out! I find it difficult enough to use phones (because brain fog & anxiety). I'd been discharged because they hadn't heard anything from me. I was told to get in touch with my GP, and get re-referred. I said thank you, and hung up.

After the phone call, of course I became panicky. I've been needing physiotherapy for so long, and it seemed to be so hard to obtain an appointment! Mum rang the GP surgery for me, and passed the phone over when she got through to my GP's secretary. I was still panicky and confused, but I had to take the call. Thankfully, the secretary was lovely! I explained my situation, worried that I wouldn't make any sense, but the secretary understood & got it sorted for me. She warned it would be a long waiting list though.

I was expecting another few months wait, but I had a hospital letter come today, with an appointment for the start of November! There must've been a cancellation. The physio place is close to my house, so I should be ok getting there. I've been to that place for blood tests too, so know my way around.

My next post will probably be about my first physiotherapy session. In the meantime, thank you for reading :)