A Journey of Self Healing

A Journey of Self-Healing

Hopefully I can get through this entry without apologising for being behind in blog posts, for being ill and so on because the fact is none of it is something I have control over. While I wish I’d been better at blogging or been able to work on other projects, the fact is my health comes first and cutting down my to do list has been difficult in that respect. It’s been over a month since my last hospital appointment, an appointment which effectively saw a horrible doctor dump everything in my lap and tell me that my all over agonisingly painful glands were all my fault. I don’t want to go into details about that, but he was very rude, very dismissive and very ignorant of anything I had to say. So I am on a journey of self healing, working on several aspects of my life to try to get better. Honestly, I’m not hugely convinced. I was planning to work on one of those aspects anyway, and had already put things in motion for that, but the second one.. yeah really not convinced, neither is anyone else in my life. Still, I have no where else to go right now in terms of finding a solution so I am taking the time to work on these things and help myself.

 

Being able to defer my dissertation until January has been a big help. I currently only have life things that must be done, aka necessary errands, chores, appointments. That’s not to say nothing else is getting done, current blog post for example; I’m just not stressing or feeling too guilty if I don’t manage it. Now that I look back I realise I’ve been on the go for several years now, with health problems causing me to lose my summer breaks to studying for resits (this one being no exception). I need some me time, some time in which I can have a day of doing nothing if I need to because I feel ill, or simply because I just don’t want to. Even typing this I’m feeling the social guilt that tells me I’m lazy, that I’m wasting my potential. The thing is that we all need time like this, and we very rarely are able to get it.

I was away for several weeks recently on a mini-holiday, and then I was ill with a flu like virus immediately after which curbed my motivation significantly. I’ve been slowly working my way back in to things, doing bits here and there rather than trying to tackle a big project all at once. I’m hoping to build up week by week so not to pile the pressure on, and therefore, allow myself to build whatever it is back up to allow me to tackle multiple things at once – even while ill, because that part of life isn’t ever going away.

Invisible Awareness Week

Invisible Illness Awareness Week

It’s INVISIBLE ILLNESS AWARENESS WEEK!

As many of you know this is something very dear to me and very important to me, so any oppertunity to promote or educate people about invisible illnesses I will do so. So please take the time to read through it all and feel free to ask questions – however, this is my life and I do have to live with it so keep your criticism to yourself please.

30 Things About My Invisible Illness You May Not Know

1. The illness(es) I live with is: hypermobility syndrome (primarily knees, wrists, hands, neck, hips, shoulders), irritable bowel syndrome, rhinitis, migraines, asthma, depression/anxiety.

2. I was diagnosed with it in the year: Multiple years starting with asthma when I was 11, hypermobility when I was about 14 and the most recent was rhinitis about 2 years ago.

3. But I had symptoms since: Since birth? Hypermobility is genetic so I’ve always had it even if it didn’t show itself until I was in my teens. My asthma symptoms were all through childhood but it was only when my archaic childhood doctor left and I got a new GP that the possibility of asthma was even considered.

4. The biggest adjustment I’ve had to make is: Learning my limitations and living with them. It’s really easy to say ‘well of course you have limitations, you’re disabled!’ but the fact is it isn’t always easy to come to terms with it, especially if your illness progressed and worsens over time – or you have a condition which isn’t easily treated, therefore you suffer for a long time before someone finally is able to help you. I don’t have to just deal with one of my conditions, I have to deal with them all interacting which means I can’t just do things impulsively, I have to plan where I’m going, how and when and when I get there I need to scout out things like rest areas, lifts and toliets.

5. Most people assume:  That I am a slacker, that I’m making stuff up or could ‘do more’ to work through ‘my issues’. People don’t understand chronic pain or depression until they’ve had it themselves.

6. The hardest part about mornings is: getting my body to do its thing – I need to let my tummy settle, my emotions get their act together, not to mention waking up and not feeling extremely fatigued. Sometimes pain and stiffness can be an issue as wall but usually meds sort that out. In the morning it is my tummy that is the biggest hurdle.

7. My favourite medical TV show is: House because it investigated a range of health problems rather than just being a typical/most known one. Ok, there was the ‘it’s lupus’ ongoing  joke but the key words there are; ongoing joke. Most medical TV programs also focus on major issues or cancer, House had so many different things.

8. A gadget I couldn’t live without is: My laptop and my kindle; I can’t write for long periods of time or carry heavy things, so ebooks and having a laptop to use for lectures/classes is an important part of me furthering my education. I couldn’t have gotten through my 2nd degree and now my postgrad without it.

9. The hardest part about nights is: Getting comfortable and not stressing about not getting enough sleep. With all my health conditions it can take any one, or a combination of them, to make my nights difficult. I need at least 7-8 hours sleep and if I feel like I’m not going to get that I’ll start stressing about the next day.

10. Each day I take: As this is a public post to promote awareness I don’t feel comfortable listing my medication for all the world to see. So here’s a total of how many meds I take a day; 9 different medications every day with 4 optional, which is a total of a minimum of 17 tablets a day, plus 2 inhalers. Then there are extra non-prescription things like cold patches, massage oils, pain gels, nasal inhalers, vicks, heat pads/hot water bottles, ginger and lemon tea etc. which I will need to use multiple times a week.

11. Regarding alternative treatments I: I’ll use anything that will help me as long as it doesn’t badly interact with my medications. For this reason I don’t use homoeopathic remedies because I’m on so much meds, unless a doctor clears it.

12. If I had to choose between an invisible illness or visible I would choose: I honestly don’t think it matters – if it’s visible you still get ignorance and prejudice, it’s just aimed slightly differently. People still suffer and have to deal with things on a daily basis. Neither is better or worse – the most important thing about disabilities is that they are all important, it isn’t a competition. Just because someone can walk doesn’t mean they’re not in pain every single step of the way – something the UK government doesn’t seem to realise but that’s a different rant entirely!

13. Regarding working and career: I have 2 undergraduate degrees because after the first one I had to re-evaluate my career options. Most History of Art related jobs were either too physically intensive (on your feet a lot) or required fine motor skills that I no longer possess. Information and libraries is a sector which allows me to sit down, take my time and do things at my own pace using body parts that haven’t given up on me yet 😛

15. The hardest thing to accept about my new reality has been: Limitations as mentioned before (including future limitations such as being unable to pick up my future children), but also the fact that the UK government does not provide ANY support for young people who are in chronic pain/suffer from multiple conditions but can still walk/have all their limbs – some people have successfully fought and won, but they are a minority and it has been a hard/emotionally taxing fight. It is incredibly depressing and mind-numbingly lonely to realise no one can help you. I’ve had to go to a private physio to get the help I need to improve my life.

16. Something I never thought I could do with my illness that I did was: So much; finding someone who understands and supports me no matter what and wants to have a future with me, as well as completing 2 degrees and now working on a post grad and actually be able to consider a career in a field I love.

17. The commercials about my illness: Generally only IBS gets one.

18. Something I really miss doing since I was diagnosed is: Being able to explore nature. I love nature, I love animals and I’d love to just go out and hike through the countryside. I just can’t do it any more.

19. It was really hard to have to give up: My independence.

20. A new hobby I have taken up since my diagnosis is: Video games – I may not be able to go out and physically explore the world or jump from tall buildings, but I can explore and complete all different manner of things in video games. MMOs such as World of Warcraft have also allowed me to do this and meet an amazing bunch of people who have helped support me over the years. You guys know who you are <3

21. If I could have one day of feeling normal again I would: Honestly, I don’t know. I have never been truly “normal” by societies standards, I’ve always been a sickly child even before things got bad. As much as everything sucks the way it is, at least I am used to it and can cope with it – a day of no pain, no difficulties etc. would just make reality so depressing.

23. Want to know a secret? Invisible illness suffers can be happy, true, many suffer from depression (etc.) but if you had to deal with all this you’d be depressed too! But we can and do enjoy life, be happy, laugh, joke, mess around. We just have to fight harder for it and ya know, I think that means we appreciate it all the more for it.

24. But I love it when people: Ask me if I’m ok, if I need anything, generally actually recognise that every day I’m struggling, fighting an invisible battle. Also, if I fall over (which happens pretty damn often) don’t ignore me, or stare and laugh, help me up.

25. My favorite motto, scripture, quote that gets me through tough times is: I don’t really have one, it’s people, family and friends who care and support me that help me more than a motto.

26. When someone is diagnosed I’d like to tell them: I’m not going to lie; your life is going to change, it will be difficult but it isn’t the end. There is a light at the end of the tunnel and things will get better. You’re not alone.

27. Something that has surprised me about living with an illness is: Nothing positive to be honest, it’s more surprised me how horrible people can be. Especially people that suffer from invisible illnesses themselves; it’s not a competition, everyone’s suffering is valid.

28. The nicest thing someone did for me when I wasn’t feeling well was: It’s little things like emailing you class notes, sending you a treat or taking over your responsibilities so you can rest.

29. I’m involved with Invisible Illness Week because: this is an incredibly important subject for me and something that will be a part of my entire life. I always speak openly about my health because if I can get one person to listen, one person to learn something new about invisible illnesses it is totally worth it – or make a fellow spooney feel better and less alone, all worth it.

30. The fact that you read this list makes me feel: warm and tingly, and hoping you read it because you a) cared and b) wanted to know more about invisible illnesses rather than just being nosey to talk behind my back (yep I’m talking about you there).

If you have any questions please ask, I am always open to questions 🙂 You’re also welcome to share this as long as it’s to help others and not to mock or anything else negative.

If you own a website or blog consider showing your support of invisible awareness by joining my web clique ‘Fighting Everyday’ – http://cliques.ruby-wings.net/fight/

It’s a 2.2!

Degree

Yesterday I got my degree classification for my English Literature MA (hons) and it was a 2.2! In my previous entry I wrote about how bad I expected the result to be and honestly, I was not expecting a 2nd at all. I stared at the screen for several minutes before the hyper hysterical reality hit me and I have been on a high ever since. I am just so happy. I am extremely proud of my fellow students for getting their 2.1’s, I know how hard they worked for them – but I’m not jealous. A 2.2 is beyond my wildest dreams for four years that have been emotionally and physically difficult. I almost gave up this year, considering the idea of resitting my final year and I’m really glad I didn’t now. I’m still waiting for my individual module marks, but it is most likely my creative writing dissertation which boosted my final mark. I seriously doubt my exam results were that good.

 

They say you can do anything if you believe in it, if you put the work in and I finally feel like that is true. I had health problems during my first degree, however, they were mostly in the final part of my final year. I had to get an extension for my dissertation and that probably cost me a 1st. I was and still am overjoyed with the 2.1 I got, just as I am with this result. There are always going to be ‘what ifs’ and sometimes, especially when it’s due to health reasons beyond my control, it is easy to get lost in them. What if I hadn’t been so ill? What if I’d not missed so many classes? At the end of the day I am very lucky that it doesn’t matter. I’m already accepted into a Masters so the result didn’t matter – wait no, that is incorrect; it didn’t matter to my career, to my future. To me personally it matters. I would have been satisfied with a worse result, yet I would have felt terrible. Like a failure. Everyone around me would have told me not to be so silly, that even just completing a second degree with my health issues is a marvellous achievement – and they would have been right. I still would have felt bad. I still feel bad about my A-level results all those years ago despite holding two undergraduate degrees now.

 

Last time I got my degree classification I had just come out of a bad relationship, and while I was proud of myself, my future was completely up in the air. I had this awesome degree, loads of knowledge and experience in my mind and no idea what to do with it. No confidence to do anything with it. That was 8 years ago, and several months later I would make a choice to return to a game I still play today, the MMORPG World of Warcraft, after a chance meeting at my cousin’s wedding. There I met Chris, the amazing and loving man who has helped me through this degree and built my confidence up one bit at a time. I still have bad days, they will never go away, but I have hope and I have love. This time I am surrounded by love and support, people cheering me on and wanting me to do well – for myself.

Memories are just a memory (Things are looking up)

Memories

There! You see I did get to use the title after all… sort of 😉

I may be a little hyped up on coffee right about now. I had some after waking up from a nap feeling really yucky and while I do still feel sleepy, the coffee and food helped a lot. So instead of heading to bed here I am right now writing a pretty damn perky blog entry. The positive mood is not just down to the caffeine though; it’s a general feeling that hit me yesterday when I realised how much better I was feeling. Physically I’m not doing so good – ear/sinus infection & my dodgy knees playing up – but emotionally I’m good. It’s the first time since the start of this god forsaken year that I have felt happy and confident. I still feel guilty considering what happened to Az… how can I be happy when something so horrific has happened? I am still mourning him, I probably always will because the loss of a loved one – human or animal – never truly leaves us.

But you have to go on living, looking to the future rather than the past. That has been a very hard lesson for me to learn, especially as I have a photographic memory and can picture unhappy memories in a flash. It isn’t a flash back, it’s just a memory in great detail. I remember the first time I was bullied when a kid stuck pencils through the hole in the school chair when I was 5. I distinctly remember 5 years later when I stepped oddly on a stone while walking to Churchfields park and had my first hypermobility caused injury; a hairline fracture in my ankle. What I don’t remember is which ankle it was because that was the first of many ankle/foot related injuries that eventually stopped as my foot became strengthen through years of physiotherapy and wearing sports support bandages for years on end. My first day at St John Rigby and the years that followed, making crazy friends who are still with me to this day. The good memories and the bad memories. Then Hayes, Leeds and the last six years with my amazing fiance.

I’m tearing up as I think back over all this – but they aren’t tears of sadness. It isn’t my depression raising it’s ugly head. They are tears of joy, of understanding of being able to lay some demons to rest. Why has all this suddenly happened recently? It’s been a stepping stone of different stages, of long term and short term events that have built me back up from rock bottom. I’m far from perfect, far from healed and as I have always known, my depression will still be there. You can’t wash away all the bad things, you just have to learn to handle them with the help of others.

I’m probably feeling even more philosophical tonight because I just watched the first episode of the new Rizzoli & Isles series which starred the actor Lee Thompson Young. For those who don’t already know; the actor was found dead this week from apparent suicide. The details are still a mystery but it does seem that it was depression that led to his death. I know how it feels to feel that bad, that alone and that powerless. I am fortunate that people have been there to help me up, to support me and kiss away my tears. I will always be grateful to those people. When I hear that someone was unable to stop the pain and felt that their only option was death… it breaks my heart. It’s one of the reasons why I always offer people a shoulder to cry on, a listening ear and I speak openly about my problems. I’ve even heard someone crying before in a toliet at university and asked if they were ok. I know it sounds stupid but my hope was that the girl might register that even a stranger could care about her, that she wasn’t alone.

Since officially being accepted for honours I’ve had to sit and twiddle my thumbs, waiting for my academic profile to be progressed onto the next year. It has apparently been fixed, however, until mycampus (the system) has been updated after a major error happened, I won’t know for sure. It means I’m stuck waiting to find out what classes I actually have as no one has confirmed anything with me at all. I know I have creative writing both semesters and in semester 2 a course called “humanities in the classroom” which includes a work placement. I only know this because I had to apply separately for both of these. So I have no reading lists, which is a good and a bad thing. It means I get to read whatever I want to read – currently the Iron Druid Chronicles – but it also means less time to read stuff before the beginning of term. I’ve also heard that one course – the vampire literature one – may not even be happening this year *cries*. This means I may need to find another course from somewhere as well… but I will know nothing until mycampus is sorted. I am hoping – just like everyone else – that this will be the start of next week.

Wow.. this entry is going on for ages. I still have two more points to get through before I finish and head to bed. The first goes with the general feel of this entry; the future. Next wednesday I have my first physio appointment and I’m hoping praying that they can actually offer me something useful. This will be the third time having physio on my knees… having is actually the wrong term as the previous ones didn’t actually do much apart from show me how to do exercises and send me off to do them. The one in Leeds spent most of his time lecturing me on how I wasn’t standing/bending/moving correctly. Dude, you try having this condition and then tell me it’s easy to re-teach your entire body to stand/move/bend differently. Guilting someone into fixing their body when they cannot help it – my body thinks what it is doing is the natural normal behaviour of a body – doesn’t HELP. Anyway… rant over 😛 I was supposed to be talking about how I noticed this week my sudden vocabulary changes from “if I do creative writing, my novel/protagonist will be…” to “my novel/protagonist is going to be…”. No honours went losing out on the chance to start down the official creative writing road and while it is scary, it is damn exciting too. I can’t wait to get started!

And the last point finally; work and how well it has been going, and then that rant stole the show. Everyone is really friendly, and the only down side is the lack of stuff to do sometimes. However, the next few weeks will see that changing and I’ll probably find myself wishing for the good ole quiet days.

Hypermobility, thy name is pain

Spoonies R Us

As mentioned in my previous entry, my hyper mobility was one of the major health related problems that caused me so many problems in Term 2. In the past week I’ve been to see my doctor about it, had a physio assessment and had an asthma review by the nurse. All of these were steps in the direction of getting myself healthier in terms of pain, weight and mobility. My doctor examined my knees and straight away saw the problem; my left knee is very hyper extended. To quote a dictionary this means; “extend a joint beyond its normal range”. That is basically what my entire body does, but my left knee apparently just “looks wrong” :-/ The right knee I’m not sure about as it’s pretty banged up from me falling over the week before, so that may have obscured stuff or it may not be as bad as the left one.

I have admittedly been putting off seeing my doctor because as many hypermobile people know, there isn’t that much that can be done about this condition. Doctor’s don’t know what to do with chronic illnesses, and physios can’t solve every problem at once. I wasn’t hugely happy with the assessment I had for physio which involved a whole lot of talking and no actual assessment of the physical problems. I would have expected them to at least LOOK at the problem area. Plus as soon as I mentioned ‘weight gain’ it seemed as though everything else I said lost legitimacy. It’s at least a 4 week wait on the waiting list, so hoping that with my new diet and exercise that I can start to shift the weight before the actual physio begins.

My new diet – I hate diets. I feel that there is too much social pressure to be a certain weight and by saying you’re dieting you are enabling it. As highlighted by the physio’s tactless ‘well that won’t help’ comment, my weight needs to lower considerably. Not just for my HMS but to stop other health problems from arising. Plus I am not comfortable in my current form. This diet is unlike any I’ve had before, it’s very strict which I usually avoid as they are very salad and fruit heavy. I can’t eat either, however, the one we’ve put together for me is easily tailored to me, helps prevent cravings and got the thumbs up from my doctor. It’s called a low-GI (glycemic index) diet and if you google it, you’ll find more information. It aims to work with your body’s natural processes by maintaining your blood sugar levels so that food energy is released slowly. I’ve only been on it a week, but the cravings seem to have gone down and I’ve already vetoed some foods that I just cannot stomach. Namely cottage cheese (looks like vomit) and skimmed milk (looks and tastes like wee wee). The hardest part has been the lack of coffee and I’ve tried some stuff which I was surprised to find very yummy. Once I’ve gotten a settled meal plan I’ll post it up so people can be nosey.

It has been hard starting a diet while concentrating on my resit, but I think it has also helped though. It’s helped me remain positive, by sticking to the diet I’ve been able to feel like I’m succeeding at something difficult and I’ve funnelled that into my academic work. I handed in the resit essay yesterday and I actually feel pretty confident about it. I put everything into that essay and if I don’t get a good mark then I don’t deserve to be studying honours. I also went to an exam workshop yesterday which was very very helpful and explained a lot about what I did wrong last time. I basically regurgitated every fact, scared of all the big fancy names and techniques and thinking that I needed to prove what I knew. I do a bit, however, the markers are looking for our own ingenuity and view point. What we notice and can put together. We went through a lot of questions and themes as well so that helped me to understand the last exam better.

 

The exam is next week and then that’s it. I’ve either done it or I’ve not. It’s a scary prospect and also a bit relief as I’ll have my summer back again. I can’t think of anything else right now except this resit and I feel guilty if I spend my time doing something else worth while. So I’ve primarily been watching tv, reading and playing little games on facebook during my study breaks.