Slow and Steady

Posts Tagged ‘Chronic Pain

In my quest to move on to living life instead of just  existing from doctor appointment to doctor appointment, I decided to try and work again. I learnt while doing  my old job that 8 hours a week was too much, I wasn’t able to swim or anything because of the hours spent preparing and teaching the lessons.

My tutor from my CELTA course kept telling me to apply to work at the college where I taught. I told her that it would be too much right now, but I wanted to temp so I still have a hand in teaching without the commitment of exams etc. and it had to be less than 4 hours so I can continue with my exercises and well being routine. She told me about a class who needs a tutor for 3 hours a week until Christmas, maybe in the new year too. It is just teaching, no paperwork, no tutorials, no tests. I accepted that. I went through Reed as their enhanced CRB check only takes a week.

Anyway I phoned Access to Work and it’s all changed. Before, you spoke to a friendly person who took down your details, then you were assigned to someone who would sort out the payment bit. It was a very positive government department, and I really liked dealing with them because you got a sense that they were happy to be helping people get back into the workforce.

Now, I was asked loads of questions in a very disbelieving tone. It was horrible. The person I spoke to said she had gone on the tfl website and saw that there is a bus that can take me there directly. I replied that I can’t get to the bus stop because it’s too far.

Then she asked me why I couldn’t drive there. I replied that driving, then walking to the classroom, walking round doing the lesson and then driving home is too much and will leave me in a flare up.

So she said “why doesn’t one of your family drive you there?” I replied I’m the only driver in my family. Then she said that she’ll make a decision and get back to me soon.

I came off the phone worried as hell, how am I going to manage if Access to Work don’t help me? I can’t afford to take cabs, there would be no point in me working as I’d be working to pay my cab fare!

I decided to test it and drove to the college. I was in agony by the end of the lesson. Luckily my sister has a friend who goes to the college and she drove home. My sister had to help me into the house. My legs were shaking really badly.  Apparently my sister’s friend started crying because she had never seen me in a flare before. I couldn’t manage the stairs so had to go loo in a bloody Flora container.

I’m sure I’ll be able to laugh about that in a few years.

The next day I nearly fell down the stairs. My mum’s OH had to carried me down. The next time we spoke he told me that he couldn’t sleep properly that night because he could get the vision of my feet nearly coming off the step while I was clinging on to bannister and my stick.

So no, I can’t work with getting transport help. I got an email to say they will help me for the rest of the year. I’m so relieved, but can’t help wondering, what will next year bring?


I went to the Aztec Centre today. The website says

The Aztec Centre in Croydon has the largest selection of assisted living and mobility aids in the area.


I went there to get a stick with a stool. When I’m walking I tend to stop a lot because it hurts my back. I tend to lean forward to stretch my back. I thought having a stick with a stool would be handy. When I get to the centre, there is a young lady who was very friendly and came to help me straight away.

Then it all went a bit wrong.

She showed me the 2 styles of stool sticks they stock and told me quite bluntly that they were both rubbish and a waste of money.  I appreciate her honesty, but I couldn’t help but be upset. I didn’t say anything to her because it’s not her fault, she’s just selling them.

Truthfully though, I did cuss her out on the way home in my car. I thought that if she knows a product is crap, why isn’t she reporting it and getting something done?

Then I remembered the amount of times I used to complain about products at my old workplace that were rubbish, and the powers that be never responded.

This pisses me off though. This place is The largest selection of assisted living and mobility aids in the area.

Yet they have only 2 styles, and each of them are rubbish? Fix the fuck up.

I know I can buy it online, but there are things that you do need to see. If I had bought either one of those sticks online, they would have both needed to be sent back. That is not always free. Also, lets remember a lot of the people who need these aids may be elderly and not have computer access.

On one, the actual stick on one wasn’t wide enough  have a solid base. It was more of a long umbrella width than a stick. The other seat was low, made from elastic, and hard to get up off.

I know everyone’s conditions are different but I honestly don’t know who would find those helpful. The assistant knows that they are not helpful. So do something about it.

I’m going to send this post to their customer service department. Will anything change? Who knows, but at least I know I tried.

This, coupled with the wheelchair scenario and the fact my room still hasn’t been hoovered over 10 days later has left me in a  bad state today.

Bed time for me.

Had my appointment with the rhuemy this week to get the results of the mri I had done on my SI joint. All fine. Yes I know, it’s a good thing, but bloody hell.

The reason why I say I’m not back to square 1 is because they know my blood has inflammation, they just need to find out why. Unfortunately that can’t been done for now. Why? Because apparently I have fluid on my lungs. Now the Rheumy told me about this when I saw her last month. Apparently was on an old MRI and no-one thought to say anything because that is not what they were looking for.

She send me to get an xray that day, and it came back showing it’s still there. That’s not good according to her. Not really serious, but something that she thinks needs further investigation, especially as I do feel out of breath sometimes. I told her that when I was explaining why I thought I had Ankylosing Spondilytis.  So now I’m being referred to the chest clinic, which takes up to 10 weeks.

So it seems like they are finding out everything that is wrong in every part of my body but my neck and back. Oh yes, while the mri came back clear or my joints, I had a fibroid.

What can I do but shrug and laugh?

She said once that is sorted out she’s going to think about giving me steroid injections. She also gave me a prescription for pain meds my doctor didn’t want me taking as they’ll cause weight gain. She told me to give them 10 weeks.

This week was the anniversary of my accident, and it still hurts. It’s hurts that my life changes without my say so. It hurts that I’m still in pain everyday. It hurts that I’m scared of damn near everything.

I switched my phone off, and cried, read and cried some more.  At some point, I said to myself, ‘why are you crying? You’re alive! Your old life is dead, but who cares? Get another one’. So then I started asking God to show me why I didn’t die? Obviously there was a reason, but it surely can’t be to just live in pain. I’ve not been THAT bad.

I can’t explain what happened next, but I just felt very calm, and decided that the day will be a celebration day instead. I’ll do something nice for myself, by myself.

Have you made resolutions this year?

I’ve said that I don’t have any, mainly because resolutions, to me, are associated with things that never get done. I’ve got goals, goals that I will reach, and extend beyond the year. In a couple of positive living articles that I have read, they’ve talked about doing things one at a time, so you can give yourself and the goal the appropriate energy.

I agree as when I have tried to juggle, everything just dropped! I also think that when working lots of things, as you change your goals may change, so may not want to do something any more, but don’t want to stop because you’ve already put work into it.

Obviously there are things that need to be put into place and be worked on, like a budget and finding somewhere else to volunteer, but most of my energy will be focussed on the main goal.

This is probably no surprise, my first goal is my body.

I need to make my body as healthy as I can.

Food wise I’m going to use 3 day fruit flushes to get my weight down. The fruit flush I’m doing is devised by Jay Robb, and for the 1st day, you drink only protein shakes and in the evening you have a huge salad with a piece of protein. On days 2 and 3, you have fruit every 2 hours until the evening when you have a salad and a protein shake. I’ve done it before as one offs and it’s worked, I’ve lost about 7 pounds each time. What also usually happens is that afterwards I’d naturally add more veg to my plate.

In the book it’s suggested that you do this for 12 weeks for a weight loss program, it says that after the initial one where you can lose up to 9 pounds, you should lose about 2 pounds a week. Not much, but I think taking it slow is better anyway. I’m happy with doing it this way because I like the fact you eat a lot of fruit and veg. I don’t weigh myself, so I’m going to be using my clothes as a guide.

I’m also going to start taking turmeric as it’s an natural anti inflammatory which is good for the joints, and is also good for HS too. I can’t take normal ones any more as they affect my stomach.

I’m going to start body brushing. I have cellulite down to my knees. I’m not sure if it does work, but I have the body brush so why not try? Also, I’ve been reading articles on how not to look frumpy in flat shoes, and a few have suggested wearing a slightly shorter length skirt to give the appearance of a longer leg. I wouldn’t do that at the moment because I’m so conscious of it… Actually I did it on New Years Day, and I was uncomfortable.

Positive affirmations in the present. Things like “I am healthy and happy with my weight”. “I am happy that I fit into my old clothes”.

Try osteopathy -There’s a school not too far from my gran’s house. I’m going to get a friend to drop me as I think I may be sore after. This is going to be one of the last things I do, because I need to budget for it first.

Try to work out an exercise routine that fits in with work.

The next goal will be my phobia.

I have a phobia developed from my accident. I’ll be working on it with C.A.T. My psychiatrist recommended it to me, and I like the idea of this kind of therapy because there is a time limit on the sessions, and there’ll be a  goal. I prefer this than going somewhere every week and just talking and talking.

My next goal is work

By the time I get to this, I’ll probably have been sacked from my current job. I intend to start some volunteer work in teaching, and look for some part time work teaching after I leave the company I’m in. This is all I can say for this right now.

I am going to be setting financial goals, but they are basic. Save, save save.

The cough still hasn’t gone. It’s less painful in my back, and for that I’m very very thankful for.

The weekend was horrid. I couldn’t sleep for more than about 3 hours without waking up coughing. My mum had to help me out of the bed to get to the bathroom because I couldn’t do it alone. A friend of mine phoned me at about 6 in the morning after seeing my facebook status update, and I couldn’t even cry properly because it was so painful.

So where’s the positive bit? Well last week I decided that instead of trying to loose weight in the New Year, I wanted to get to my preferred weight before the New Year. I’ve got a dress I want to wear on New Years eve, and have it hanging on my wall as motivation.

I know I can’t exercise everyday, it hurts my back and neck, so have been contemplating different diets, and even fasting. I used to fast once a year before my accident.

I’ve been given a long term course of antibiotics as my HS (note, link may be TMI for some. You may not want to read it if you’re eating/have just eaten) has flared up again, and wanted to get some probiotics to replace the good bacteria the antibiotics will be killing.

I went to Holland and Barrett, and got talking to one of the employees about wanting to lose weight. She first suggested the most expensive thing of course, but when I refused she showed me Tonalin CLA,which I decided to buy. Here’s some information on it.

CLA is a newly recognised supplement derived from natural safflower oil. CLA or Conjugated Linolic Acid is found naturally in a variety of foods. Over the past decade, however, our changing dietary patterns have diminished those foods high in CLA content. Tonalin offers a rich source of conjugated linoleic acid from the oil of the safflower to supplement the diet naturally.

When you consume fat that your body does not need to use for energy, it is absorbed by fat cells with the help of an enzyme called lipoprotein lipase. CLA blocks this enzyme and diverts unused fat to your muscle cells. The CLA then activates another enzyme which helps your muscle to burn this fat, especially during exercise.

That’s why, when used in balance with a healthy diet and regular exercise program, Tonalin® CLA is so effective in helping you lose body fat, and keep it off.

Because it is so effective, Tonalin® CLA can also help eliminate the unhealthy “yo-yoing” pattern of losing and gaining weight. Clinical studies have proven that Tonalin® can prevent fat regain.

Since I’ve had this cough, my body doesn’t want food at all. Even tea is too much so I’ve just been drinking water. It’s like I’m fasting, and I’m loving it. It feels like my system is having a complete rest. I’ve been sleeping, reading, doing the very basic of stretches, and listening to music. When I try and have a conversation I end up in fits of coughs so I’m not answering my phone. I’m in my own little retreat. As I get better, I’m going to continue having just water, then increase my stretches. I think this is going to get me into my New Year’s eve dress!

I gave myself an angel card reading a few weeks back and turned the messages in screen savers. One in particular describes this situation perfectly.

I certainly didn’t expect to lose weight by having a cough!

Negative in positive. Loving it, and thanking God for making it possible.

I swear, when one part of your body doesn’t work well, you realise just how intertwined everything is.

I haven’t had a cough in nearly 3 years. I think it’s because I’ve been in the house most of the time as my mum and sister both have had coughs and colds and I was fine. Now I’m back in work, around loads of people, I’ve picked up this horrid smoker’s sounding cough.

Do you know how hard coughing is on your back? Every time I cough it feels like I’m being hit with a bat on my lower back. The impact of it also hurts my neck as coughing seems to throw the neck forward. It’s only a tiny move, but it hurts so I’ve noticed I’ve been tensing my shoulders to try and keep my neck still which in turn hurts the neck.

So unless this cough disappears overnight, my weekend plans will have to be cancelled.

It’s things like this that people don’t think about, that the benefits agency and GPs don’t get.