Wednesday, 12 December 2018

More pain *sigh*

(TW: Meds)

As the weather gets colder, my chronic pain gets more severe. Even on the highest dose of Tramadol (moderate release) I am not getting enough pain relief. I've been suffering breakthrough pain. In a nutshell, this is pain that is not relieved by my usual painkillers. It "breaks through". I tried dealing with it by using hot compresses, TENS machine, CBD oil, and even some old Codeine that was still in date. Most of that didn't work, and the hot compresses only helped a bit, for the duration they were on me. I vented about it on social media and some good friends advised I see the GP.

Another problem I had started three days ago. I woke up with cramp in my left calf which hasn't gone away. I mentioned this to my GP too.

I saw the GP this morning. It was an uncomfortable wait, thanks to the pain and cramping. Eventually I was called through. I wondered whether a quick release opiate (such as normal release Tramadol) could be added on top of the moderate release Tramadol. Unfortunately, she was worried about the risk of overdose, so decided to look for something else.We went through my medication history to see what I have tolerated in the past, and finally decided on either Pregabalin or Gabapentin, as these are specifically licensed for Fibromyalgia. I've been on a low dose of them before and tolerated them, but not found relief. My GP wanted to see if I could start on the same dose then titrate up, and hopefully it'll work. I'm slightly skeptical, but willing to give it a try. I'll blog about whichever one I try (I forget which she decided on) and let you know if I notice any difference in my pain severity. She did actually ask how severe the pain was on a scale of 0-10. I said it tended to be a 7 or 8, so bordering on the severe end. I told her it affected my functioning, and I wasn't able to do the exercise I needed to. She did tell me to try though.

The second thing I needed to tell her about was the cramping in my left calf. I told her how it'd been happening for 3 days now and hasn't subsided at all. She didn't seem worried to be honest. She asked if I'd tried various things such as stretching exercises, hot compresses etc. I told her I had but didn't have any luck. She examined my calf (ouch!) and said it didn't seem very tense compared to the other calf.

Once we'd sorted out my prescription requests, that was pretty much it. I think it was a fairly successful appointment, and the result was what I expected really. I would've been very surprised if she'd prescribed the normal release Tramadol, or Oramorph (which would be wonderful for pain relief but I highly doubt would be prescribed unless I was on the floor screaming in pain).

 My next post will likely be about my ENT appointment for dizziness, so stay tuned!

To all my fellow spoonies who experience chronic pain, I hope you are able to stay warm and dry, with minimal pain xxx

UPDATE:

It was Pregabalin that I was prescribed. I've been taking it for a couple of days now. So far, I haven't noticed any pain relief but I'm only taking 150mg per day at the moment. It is making me quite foggy and drowsy though, but I think I can cope with it. Please comment below if you've had experiences with Pregabalin for Fibromyalgia pain. Has it helped you? Were the side effects easy to cope with, or too much?

Thursday, 22 November 2018

Physio for Neck Pain and Dizziness

If you read my previous post you'll know that I have been having some new and worsening symptoms over the past few months; namely dizziness, fatigue, and some neck pain (although I put that pain down to a fibromyalgia flare up). After various tests came back negative, my GP referred me to an ENT specialist and for physio. My ENT appointment is next month, but I had my physio appointment a couple of days ago.

When I signed in at reception, I was given some paperwork to fill out. I had to rate how severely the pain has affected certain activities, and whether I did exercise other than general housework/daily tasks etc in the past week or so. At first, I was thinking of my pain as a whole, but of course they only needed to know about my current problem i.e. neck pain.

When I was called through to see the physiotherapist, I found she was the one I'd seen about my hip bursitis a while back. She asked how I was, then asked me some questions about my neck pain and dizziness. She then got me to sit on the bed while she examined my neck and shoulders. She noted that I had a lot of tension there; which she said is common for people with Fibromyalgia (one of my diagnoses). Next, she asked me to do some movements, to check stiffness and pain when turning my head in different directions. Other than some stiffness when turning my head left and right, there wasn't much else that was noticeable. I explained that I get dizziness when turning my head left to right, and also find I have this weird scratching noise as I turn. I also told her that the dizziness was not only when I do that, but also when I stand from sitting, or sit up for a while. She asked if I'd ever fainted due to this, and I explained that I hadn't, but I'd been very close.

After this examination, she said that she believed the neck pain was due to my Fibromyalgia (which didn't surprise me) and that unfortunately physios can't treat that condition anymore. It is down to GPs and Rheumatologists. I did have a Rheumatologist for my initial diagnosis, but he told me he couldn't do anything else for me, so I don't actually have a specialist for that (or my Joint Hypermobility Syndrome come to think of it).

The physiotherapist gave me a few booklets for Fibromyalgia, Joint Hypermobility, and Neck Pain, which had some exercises in. I'm to keep doing them, but she doesn't need to see me for a follow up.

When I got home, my pain (especially in my neck and shoulders) was horrendous. It had started up ever since the physical examination, and kept getting worse. I took my painkillers (tramadol slow release) but they didn't do anything unfortunately. I really needed something that would work instantly. My pain is a little better today, and I've had a couple of things delivered to hopefully help. These are an unscented wheat bag to go around my neck and shoulders, and a bottle of orange flavoured CBD oil from https://okcbd.co.uk/ . I have only had a couple of drops today, so cannot say if they are working yet, but in the next week or so, I think I'll write a review on my blog, for anyone thinking of trying this oil.

I'll leave it there for now, I hope you are all as well as possible!

Tuesday, 23 October 2018

New/Worsening Symptoms

I thought I'd write another quick updates post as, for the past 2 or 3 months, I've been having some suddenly worsening symptoms. My fatigue has been very bad (to the point where it's taking all my effort just to stay awake) and I've been having a lot of dizziness when sitting up or standing for a while.

I'm also finding that I crave salt, and after eating carbs, my dizziness worsens. I keep getting feelings that I'm going to faint too, but I've only ever fainted once in my life (about 5 years ago).

Other things that make my dizziness worse are:


  • overheating
  • turning my head
  • overexertion
  • pain
I've seen the doctor twice about this, have had blood tests (all normal) and an ECG (normal). My GP has referred me for physio (as she thinks I may have a neck problem) and to an ENT specialist to see if my hearing is affecting this. 

I did ask if my symptoms could be caused by a condition called Postural Orthostatic Tachycardia Syndrome (POTS) and the GP said she doesn't think so, because my ECG was clear, but she will refer me to a Cardiologist (who will assess me for this amongst other things) if ENT and physio can't help much. 

I have my first Physio session next month, but I'm still waiting for my ENT referral letter. I'll update my blog accordingly.

UPDATE: My referral came through! On 21st December I have an appointment at Russells Hall Hospital in the ENT- Neurotology department. I'll write a new blog post when I start physio and then when I have my first ENT appointment. Please comment below if you've been referred to a similar department for dizziness. How did it go? What tests did they do?

Thursday, 4 October 2018

Airport Assistance - My Experiences

On 13th September, my parents and I went on holiday to Gran Canaria. We flew from Birmingham Airport. Having had varied levels of service from Airport Assistance, I decided to live tweet my experiences in the airports and on the plane both on the way, and coming back from holiday. I will expand on these below:

Outbound - Birmingham Airport to Las Palmas Airport

As we arrived at Airport Assistance, there was a bit of confusion as all three of us needed assistance. Staff, however, had been friendly and helpful so far. Dad and I were taken through security fairly quickly, with no issues. Mum was looking for her bags though, as apparently she went one way and they went the other. My Dad and I were taken from security to Number 1 Lounge. We weren't happy that we were separated from Mum. The staff were very impatient though. Eventually, we all met in the lounge with well deserved drinks! There wasn't much time until we were taken to the gate so we hoped the food we ordered would arrive asap. Thankfully, we didn't wait long for it, and had a bit of time before being collected by assistance staff.

The rest of the journey went pretty smoothly and at Las Palmas Airport (Gran Canaria) we were whizzed through quickly and made good time for our taxi. It was the journey home after the holiday that was more problematic.

Inbound - Las Palmas Airport to Birmingham Airport

My parents and I arrived at Las Palmas Airport (Gran Canaria) in good time, a few hours before our flight was due to depart. Finding the right check in desk was quite confusing though; with not a lot of information. We eventually found the fast-track queue for people needing special assistance though. We explained that all three of us would need assistance to get round the airport and onto the plane. An airport wheelchair each for dad and I, and mum had her own wheelchair. The staff member was fine about this and we didn't have to wait long to get assistance. All good so far.

Getting through security was quick and straightforward. My piercings didn't even set off the alarm! Security were helpful, respectful, and efficient. We were whizzed through to the special assistance area before you go to your gate. All the other special assistance staff were fine, apart from a very angry and stressed out manager. He snapped at staff members and got confused over who was together on which flight. This confusion did worry some of the people needing special assistance.

Eventually things were sorted and we were taken straight to the plane, using the ambulift. The staff ensured everyone was secure before the ambulift set off. Some pretty robust attachments kept mum's wheelchair secure too. There was a bit of a wait for the plane's door to be opened, but we were boarded before the non assistance passengers. That's where the straightforward-ness stopped.

The Thomas Cook flight attendants weren't very professional or organised. The flight departed around 9.30pm. We were due to have in flight meals, but were not served until midnight. I was feeling ill as I hadn't eaten since 1.30pm so dad had to let staff know. The staff were more interested in chatting to some old guy that wouldn't go back to his seat for ages. They also decided to sell competition cards and drinks/snacks before eventually getting round to the in flight meals.

Apart from the passenger in front of me putting her seat back so far that I could barely move, the rest of the flight was ok. Food made me less dizzy and nauseous. When the plane landed, special assistance passengers had to wait for other passengers to leave the plane. Instead of a tunnel that we could all use, steps were taken up to the plane's front door, so we had to wait for the ambulift again.

Unfortunately some of the airport staff had blocked the way to the front door with equipment, so the ambulift could only be attached to the back of the plane. Most of the passengers needing special assistance were seated near the front of the plane however. We had to walk right to the back of the (large!) plane. Mum's foot was very swollen and painful, so the staff thankfully used an aisle wheelchair to get her into the ambulift.

The special assistance staff at Birmingham Airport were varied in their competency and attitude. One staff member (young lad) was as helpful as he could be, but was inexperienced. The other staff member (older woman) was rude and impatient. The female special assistance staff member tried to hurry us out of the ambulift. She hadn't brought wheelchairs for Dad and I, and seemed suspicious when we said we needed them. Luckily there were vacant ones nearby.

A few things happened which annoyed me. When being suspicious about Dad and I needing wheelchairs, she said "Really? All 3 of you need wheelchairs? How on earth do you manage on holiday?" She also barked at mum "brakes. now." before wheeling her into the airport.

After about an hour after the plane initially landed, we eventually got through the airport, through passport control and to the baggage carousels. The female member of staff spoke over us rather than to us for most of the time.

When we arrived at the baggage carousel, instead of checking we were ok to walk from there, the female member of staff said to the young male member of staff "I'll leave them here, they'll be fine" They then walked off. Luckily the young member of staff saw we were struggling to get the suitcases onto the trolley. He came back & was brilliant. He helped us with the suitcases, pushed mum in her wheelchair right to the taxi stop; checking that I was ok to walk there and that dad was managing ok with the trolley. Even though he seemed nervous and inexperienced, he helped us MUCH more than the rude female member of staff.

We were very late for the taxi (and got a lecture from the taxi driver) but at least we were going home!

So that was my most recent experiences with Airport Assistance! I have complained to Birmingham Airport and Thomas Cook; using their complaint forms. I'm not sure what to expect from their responses, but I hope they respond quickly and speak to the staff concerned. Clearly more training is needed.

Have you used Airport Assistance? Which airports? Comment below with your experiences!


Wednesday, 22 August 2018

Mental Illness and Emotional Eating


(Trigger Warning: Detailed discussion of weight, diet, and disordered eating)

Disclaimer: This post is in no way designed to promote dieting, disordered eating etc. This is purely an account of my own experiences with emotional eating and my perceptions of my own body.

Emotional Eating: "The practice of consuming large quantities of food - usually "comfort" or "junk" foods in response to feelings instead of hunger." (source: https://www.medicinenet.com/script/main/art.asp?articlekey=46450)

I am most definitely an emotional eater.

The mental health problems I have do cause a lot of complicated and negative feelings. I spend most days looking for distractions and comfort. I'm lucky in that food is readily available, I can use online apps to order takeaway, and my local supermarket is within walking distance. Unfortunately, this also means I can quite impulsively buy food, especially when feeling low or stressed.

Despite this, I'm actually trying to lose weight. (I am very body positive of course, but personally I don't feel comfortable with my own body). I'm trying to find other distractions or non-edible "treats" in response to my emotions, but this is very difficult.

Although the weight loss program I'm on helps me to eat in a healthier way, it also means that I am constantly thinking about food. The mindset I seem to have at the moment (which, according to my consultant, will most likely change) is that food is something to use as a way to treat myself when I've achieved something, console myself with if I feel down or frustrated, and occasionally even punish myself with if I feel like a failure.

Most of the time, especially since trying to lose weight however, I feel guilty after comfort eating. I worry so much about the potential "consequences" (i.e. putting on weight) and sometimes that only results in more emotional eating. It becomes a vicious cycle of guilt, emotional eating, more guilt, more emotional eating, and so on. It's not easy to break out of this cycle, but usually the guilt gets so severe that I stop.

This weight loss program is starting to help me think about food in a different way (e.g. to enjoy in moderation, experiment with, learn more about etc) and I think I can manage my emotional eating myself, but I know it is going to take a while.

In the meantime, I'm going to focus on other distractions (I recently took up cross-stitch again!) and addressing the feelings I have. I will still treat myself, but I will try to be mindful of the signs that this is becoming emotional eating.

I also want to address the guilt I feel when eating foods considered unhealthy. Words such as "naughty" and "junk food" are really unhelpful. Food is not something to feel ashamed of eating. It's a difficult thing to balance; body positivity and attempting to lose weight, but I'm trying.





Tuesday, 14 August 2018

A Day in the Life of a Chronically Ill Person: Flowchart Edition

I've been wanting to do a "day in the life" type blog post for a while now, but I wondered how I would show this. A load of long winded paragraphs didn't seem appropriate, so I had a good think about what I do in my day, and broke it down into steps. Because my days are filled with decisions, based on how severe my symptoms are at that particular moment, I decided a flow chart would be the best way to present this. Apologies for the imperfections, this was done on OpenOffice Writer, screenshot and pasted to Paint, then uploaded as pictures here. 










I hope this explains a typical day in the life of a chronically ill person well. How do you manage your days? What types of decisions do you have to make? Please comment below.

Wednesday, 1 August 2018

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?