Fighting for Breath

I Have Brittle Asthma. Everyday can be a battle to breath and survive. This is a space to share, rant and come to terms with my everyday challenges and thoughts.

Life with controlled asthma

I can now say I have controlled asthma, this has made a massive difference in my life. I haven’t taken any time off sick from work, Im happy and loving life. Though I still have depressive moments I am so much happier.

I have started to reduce Pred again and so far no massive signs of it failing this has kick started weight loss and combined with healthy eating. It is slow but we will get there. Just not to rock the apple cart too much at once I am keeping the other meds the same and not trying to reduce others for now.

Over the weekend we went to London and I walked as much as a normal person. I did feel tired and bit puffed when I got on the train home but I wasn’t put off by walking meant we could see more!

I never thought I would be in the position I am in now, I was one that thought I would never get better even though I know things could change I feel I have beaten it.


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2015 has been a great year and year of change

  • Went to Majorica for a week
  • Reduced my hospital admission by 75%
  • Came off all Benefits
  • Got a job (30 Hour a week)
  • Saw the Night Glow at the Ballon Fiesta
  • Had a birthday I was proud to tell people about
  • Visited many places!
  • Saw many musicals
  • Is Fitter!
  • Moved in with a man!
  • Completed level 2 of my degree
  • Started a help to buy ISA

So what do I want for 2016, well my aim for the next year is to get off prednisone and be even more fitter. I also want to have a mortgage agreed.

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Well its coming to the end of the year and that always forces me to look back and this year things have changed.

Work, I quickly got in the hang of work and was getting to the point that being on benefits and the constraints it puts on your hours you can work was holding me back. I started to look for a perfect job I was offered a post on 2 wards I had done bank on but the commute from Mikes is hard. I got offered what I thought was perfect for me a HCA post in Minor Injuries. Well its not quite perfect,  not allot of my training transferred so now I am like a admin person. I am getting used to it but its not what I want it to be, but will continue until something else comes up or the job itself changes. I am working 30 hours a week, yes I am tired but my mind and my body seem to be coping.  I do miss out on things and sometimes I think I haven’t done the right thing.

With me working I have moved in with Mike and come off all benefits. Living with Mike is great, though there is tension over the amount of stuff around the house that is homeless! I do miss Trowbridge and having everything around me, the nearest shop is 10 minutes drive. But nothing beats waking up, opening the curtains and looking out over fields.

Asthma wise things are good, I had a short hospital admission in November which was more of a brittle asthma one, with a quick downhill spiral after it was foggy and wet. that makes 3 admissions this year! I have tried reducing some meds but when I stated to get more symptoms then I gave up. I don’t want to risk things getting worse. My consultant wants us to come up with a reducing plan for steroids when I see him in January but things have been so good I’m scared it will be like the last time.

Depression wise its still up and down work has triggered a downward trend of sadness it doesn’t help that I’m B12 Anaemic but not being adequately treated (Its a symptom). I am not suicidal which is a plus!

OU, Im on level 3 now, I am finding it hard to juggle it at the moment but I seem to get this module! Just 2 modules left

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The Extra Burdens Faced by Young People with Chronic Illness

From years of writing about chronic painand illness, I’ve learned that young people carry several extra burdens, especially when their disability is invisible (as is more often the case than not). This piece focuses on young people, although some of its points apply to people of any age, depending on their circumstances.

1. Young people are treated as if theirhealth issues can’t possibly be chronic.

I hear from young people almost every day who’ve read my books or articles and write to me about their day-to-day challenges. For many of them, at the top of the list of those challenges is the fact that other people simply don’t believe that a young person could possibly suffer from a condition that might be chronic.

When young people are treated as if their condition can’t possibly be chronic, not only do they feel disregarded, but they may begin to question their own perceptions and judgment: “Is my body really this sick and in pain? Everyone says it can’t possibly be the case, so maybe it’s all in my head.” This questioning can lead to self-recrimination and can seriously erode a young person’s self-esteem and sense of self-worth.

This ignorance about young people with chronic illness has other consequences. Several young people have told me that they’ve been openly challenged when they park in a disabled spot, even though they have the required placard or sticker. A young woman with multiple sclerosis told me that someone spit on her when she didn’t give up her seat to an older person on the subway.

I feel frustrated and sad when young people tell me that they’ve been challenged by others in this way. No one is too young to suffer from an invisible disability, and everyoneshould give others the benefit of the doubt.

2. Young people are repeatedly told: “You’re too young to be in pain.”

Source: Pixabay

Countless young people have written to me, saying that thiis is one of the most frustrating and hurtful comments they have to listen to. No matter what their diagnosis, they’re continually told that they can’t possibly be in chronic pain at their age. Imagine how hard it must be to respond skillfully to a comment like that.

A 2013 study by the National Research Council and Institute of Medicine (NAC/IOM) showed, not just that Americans are getting sicker, but that young Americans are getting sicker. We need to raise awareness about the fact that chronic pain and chronic illness can strike anyone at any age.

I have a few comments on these first two burdens—comments that I’d like to address directly to young people.

First, regarding strangers who are rude, in my view, the best response is to immediately take care of yourself by not allowing their insensitivity to make you question yourself. The problem lies with their ignorance about chronic illness; it does not lie with you. Try to separate the person’s response to you from your response to yourself. In other words, you know you’re sick, and that should be good enough for you. It takes practice, but it’s worth the effort.

As for family and friends who say your condition can’t possibly be chronic or that you’re too young to be in pain, of course, you should try to educate them. But, in the end, not all of them may be receptive. Many of my friends dropped away when I became chronically ill. I’ve learned to treasure the few who’ve stayed with me and the few who’ve newly entered my life because I know they don’t question the chronic nature of my symptoms. I’ve worked on letting the others go. I feel better when I’m able to be okay with people sometimes disappointing me and to be willing to be content with those who accept me as I am.

3. Young people worry that they’ll never find a romantic partner.

Living day-to-day with an unpredictable medical condition makes it hard to sustain regular friendships no matter how old you are. It’s even harder to find romance. This is an ongoing worry for young people who are chronically ill. Many relationships don’t get past the first date. A young woman with Lupus recently wrote to me about a dinner date she’d had. The evening was going well, but when the guy found out that she wouldn’t be able to go to a concert on the weekend because she was scheduled to get chemotherapy, he lost interest in her all together.

When I got sick, I was fortunate to have a committed partner who took that “in sickness and in health” vow seriously. It’s a sobering thought to reflect on how unlikely it would be for me to find romance were I young. That said, it can happen if an understanding and patient person enters the life of a young person who is chronically ill. It helps to think of creative ways to meet people. One woman told me that she met her fiancé online through a dating site (be sure it’s a legitimate one). She said that the two of them had become so close via their back and forth emails that, when they finally met in person, it mattered not a bit to him that she was disabled.

4. Young people often can’t complete their education.

College is usually a ticket to brighter employment prospects. But when chronic illness strikes, young people are often forced to drop out of school.

When I served as the dean of students at the law school at U.C. Davis, I tried to help a young man who’d been sick with what the doctors initially thought was an acute viral infection. When, after six months, he still hadn’t recovered, he was given the diagnosis of Chronic Fatigue Syndrome. He was a dedicated student and was determined to get his law degree. When he and I realized that he could no longer keep up in his classes, I put him on a four-year program, which extended his studies by a year so that he could take a lighter class load. We thought that would do the trick.

But soon, he lost his ability to take care of his daily needs. Some days he couldn’t get out of bed at all. This meant that he not only had to miss classes, but he couldn’t get to the grocery store to buy food. It became increasingly clear that he could no longer live independently. And so, after completing 3/4 of the units toward his law degree, he had no choice but to withdraw from school and move back in with his parents who lived in another state.

I felt so bad for him. Little did I know that eight years later, I’d be given the same diagnosis and be forced, in effect, to withdraw from the very same school.

Young people with chronic illness often have to think outside the box when it comes to their education. This can be very difficult to do when a person is already struggling day-to-day with not feeling well. Hopefully, a dean of students or the Disability Services Office on campus can help with brainstorming and with creative solutions, such as moving to an extended program or taking some classes online.

5. Young people must sit by and watch others their age participate in activities that are out of reach for them.

A few months ago, I read an article in The Atlantic that was written by the wife of a 33 year-old-man who’d been diagnosed with the autoimmune disease, Ankylosing Spondylitis. (The link is here(link is external).) In the article, she quoted her husband describing how difficult and polarizing it was to be with people who weren’t sick:

It’s, like, I’m still only 33. I probably am still considered in a lot of people’s eyes [to be] youthful enough that I shouldn’t have to deal with thinking about this kind of stuff. I feel like my parents were still partying and drinking beers [at 33]. This is the age my Dad was when they had me. I don’t think [he] was worrying about what [expletive deleted] pills he was going to take or not take, you know what I mean? They were like “We’re out of Budweiser.”

Many young people tell me about their once-active lifestyles as hikers or marathon runners or social activists or yoga instructors. They’re frustrated, and sometimes they’re very angry. Always…they’re sad. Worst of all, they tend to blame themselves for their inability to be active. I tell them over and over: “It’s not your fault.” I also encourage them to focus on what they can do and to look for others (online or in-person) who have similar interests. It takes effort, but it’s well-worth it.

6. Young people may be stigmatized by others.

When I was in grade school, all I wanted was to fit in or, at least, not be noticed. There was a boy named Alan in my 6th grade class who suffered from asthma so severe that he missed weeks of school at a time. When he did show up, everyone knew “this is the kid who’s always sick,” and we treated him differently because of it. There was certainly no fitting in, no anonymity for Alan. He was stigmatized.

I realize now how terribly hard this must have been for him. He had to deal both with his illness and with his peers treating him as different. I hope he’s had a good life, filled withlove and understanding from family and friends. I wish I’d been compassionate enough to have been one of those friends.

7. Young people are burdened with worries about the future.

Of course, people of all ages and health statuses occasionally worry about the future. But young people who are chronically ill have years of health-related worries ahead of them—worries that are likely to include: What will happen to my health in the years to come? Will my condition gradually worsen? Will I become more and more restricted in my activities? Will I be able to support myself? Will I be able to live independently or will I become increasingly dependent on my family?

I encourage young people to talk to friends and family—even doctors—about these issues. The more information they can gather and the more support they have, the better equipped they’ll be to plan for the future

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Life is Good

3 months since my last blog post, wow part of me didn’t think there was anything to say and part of me is scared to say things are good, through fear of being a fluke and part of me didn’t want to say things were good as I know friends have been struggling.

Asthma, I haven’t been in hospital now for 16 weeks, yes I have had bad days but on the whole I have found a new lease of life. I have been seeing a psychologist and he has been helping me change my mindset over asthma, he has made me adjust my thinking to be less of the medical side and more of life but also to stop being stubborn and take my inhaler earlier before things get to needing nebs. Now most normal days I don’t use a neb. People ask what I think has caused this sudden improvement and I don’t know, part of me now is the change of mindset, maybe the weather or maybe Mike gives me a reason to stay well. I am now in uncharted water and this scares me, the comfort of knowing roughly when to be in made is easier, but now I am living abit more with the worry about when it will come. I am still thinking one day it will come. In the mean time I am too busy to get sick so will carry on!

With the improvement of the amount of time I spend in hospital I have decided to start work again and have been offered a casual job that after a bit of a battle due to not working for some time I start my training on Monday. This is a step Forward in life and me and Mike have a plan on when I should be moving in but being casual job it will give me a chance to work up the hours to be able to hold down a proper job.

Me and Mike are happy, we are secure, he has been my happy pill and helped me, yes I do still have meltdowns but we cope, he keeps me safe. I enjoy every moment with him, and miss him the moments Im not with him.

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Getting Better or Just Living with Things

I feel in life at the moment Im just getting on with life, Mike said to me the other day that I seem to be better but Im not sure about that I know I went 13 weeks without a admission but should that be a marker of how good I am. I don’t feel my exercise tolerance has changed despite doing things regularly and pushing myself. I do still need salbutamol more than I like, I still feel like a sick person. I am not holding much hope in Southampton giving me any more options but in the back on mind Im scared about trying somewhere else as might not be any different.

As for state of mind feelings are still there that I don’t want, I still get so worked up I avoid certain situation and now a new thing where I don’t like hospital appointments without Mike. I do rely on Mike allot I don’t like to exercise without him, don’t like doing things without him. Is that love of becoming dependent.

We have had a few weddings this month and they have been friends of Mike this hasn’t helped my social anxiety, I clung onto Mike mot of the time. But also gave thought over my own wedding and what it would be like, this is normal for any girl but think Mike got a little annoyed. Though it did make him think of what he would want in a wedding.

A new chapter is about to begin in my life. I have been offered a place back on the bank as a healthcare assistant. Mike has pushed me towards this as my lack of earning is holding us back from moving in, moving on in life. I am so scared, Im still uncertain if I can do the job still, Im worried about benefits and how it will be affect me. But I cant think of excuses anymore I don’t want to be a benefit bum all my life.

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The other week I hadn’t done any work my reason was my ankle was bad ad this put me on a downer. My tutor had a moan at me and called me lazy, she asked what I do all day and I struggled to answer it. Since then I am finding that I am getting annoyed with wasting my days. Me and Mike also been looking at mortgages and basically without me having a job we cant get a decent mortgage together so I have gone fully into job hunting mode. But this in itself is hard. All I really know is hospital care assistant and I don’t think I am up to this yet so I am hard on myself when it asks for things I just think I am not good enough. The job market is hard and I am just worried my application will always be passed off as I haven’t worked for 3 years now. There are so many jobs that I don’t think I’m good at or qualified for that I am not bothering to apply for. Is this protecting myself or just lazy I don’t want to try. I don’t want to work I am comfortable with money at the mo but I want to be living with Mike, this pack horse back and forth isn’t doing me any good.

In other news its 4 weeks now since I hurt my ankle and still in pain with it. Gp just said be patient. its really getting me down I have so may plans for exercise and I just cant.

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Falling to Piecies

I am falling to pieces

Just over a week ago as I was walking down my stairs with the rubbish on my way out I lost my balance and feel Forward down the stairs, putting my left foot out to try and land on my feet, epic fail, my ankle gave way landing on my hands and knees. Pain in my ankle straight away, but me being me pulled myself together and drove to my parents. By the time I got there the pain was unbelievable, I was praying that I didn’t need to put my foot on the clutch but at rush hour through town that’s not going to happen. Once at home sock was taken off and a big bumb was seen. I was off for an X-ray.

At the hospital the x-ray was fine but all I was told was I could go as it was ok. I couldn’t walk. Mike had crutches at home luckily.  The swelling and bruising since there has got worse and I still cant drive and still in pain 10 days after injury. Now I am just fed up. I am meant to be exercising to loose weight and I am struggling to get up the stairs.

A little injury for some has triggered a downer, I am just fed up of my body failing me, and since then my diet has been suffering. I feel like a failure. I dropped dinner the other night I cried my eyes out.

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Over the past few months I have been seeing less and less of my family, the roles that my mum did have no been replaced ad Mike does them or help me to do them. I think she has found this difficult and is taking it out on me. Every time I see her he makes comments at me, moans about something I have done, has no faith in me and can make personal comments about me. At the moment it is getting too much for me and Mike because I am coming home ad moaning to her.

My birthday was almost the final straw. I was not given my presents or even cards from my proper family until the evening or even got  a text from them so the things I had were from Mikes family and all there presents were so me and even people who I only met once sent me a card I feel so humbled by them. When It came to the evening meal I was given my presents and received few pairs of socks and a bracelet that so isnt me from my mum and I thought she knew I didn’t like that sort of thing and to be told you can pick something out as I didn’t know what else to get you when I had been telling them for weeks ideas. My sister got me few more bits that granted was more me but again had no idea what else to buy me. I don’t like picking out my own presents that isn’t the point of Birthday presents, might as well give me the money. I had asked my mum for a cake expecting a home made cake but it was not it was a 3 weeks out of date shop brought cake that was just handed to me. It was stale so had a piece and threw it away. When I told Mum this she didn’t say sorry or I will bake you another it was just ohh OK. We had a meal out my Dad had the biggest quota of the £92 bill and me and Mike spent about £25 between us as we shared starter and main course, I was told Mike was part of the family now and he didn’t have to pay his bit but a few days ago my mum just demanded £15 towards the meal when she hasn’t asked my sister for it.

At Christmas Mum made comments about how big I am and how much I eat so this week we have started being healthy and mum just commented How can you, you have no will power. This really hurt me I know I struggle to loose weight but it doesn’t stop me trying and allot of this is to do with my medication so my aim is to improve fitness and have a healthy lifestyle. My mum is always questioning what I have eaten both when I go out and at home ad if I go a little off healthy for example having a pudding she makes comments. At times she has come to my flat whilst I’m not here ad she snoops around in bins and in my post and its like being grilled when she finds something.

Housing sore subject at the moment, me and Mike want to buy a house together but my mum almost wants to control that she believes that we are not saving enough for it and we wont be able to afford the house we want, we have done our sums and looked up the options and we can afford a nice house on shared ownership. She doesn’t understand shared ownership but still tries to tell us what we have read it wrong. The location of our house is a sore subject she wants me in Trowbridge for her reasoning whos going to look after the hamster or child when Im ill, she cant just pop around if we are somewhere else. But for us we want a house in a nice area with good transport links for both us and Mikes family and this might not include Trowbridge, there are other towns around which are closer to his parents, close enough to work or even open new places for us to work and that are cheaper.

I pay housekeeping to my mum it was more for when I was more reliant and she would do odd jobs for me like my washing or hoovering as she was my main carer so to speak. Now Mike does those for me but my mum still is demanding housekeeping. I have said I am going to do my washing at Mikes now and therefore I shouldn’t be paying her, and she mumbled along like she needs that money. I feel like I should ask for all my savings she has for me and put in Mikes account. It mine and I have a right to ask for it when I want and she shouldn’t rely on my money to support her. If she isn’t getting enough money herself its her and Dads problem not mine.

Last night I got my presents from Louise for my Birthday and she’s made comments about all of it it seems for example got fun little bubbles that should go to the Children’s Centre of given to some children as I wont use it, a tin of biscuits should be kept for when I get visitors or given to them as I shouldn’t have biscuits in the house.

Another rant, Me and Mike spend allot of time together but we still live in our own houses and mum is paranoid I am being watched and they might think we are living together when we are not. Yes I keep a few clothes at his house but only a few days worth of pants ans socks and supply of emergency drugs. It is the same here Mike doesn’t have much around anyway. She has told me I should leave my car at mine more so they think Im in but anyone to complain would have to associate that car with me and therefore my flat, most people you see once and have no idea what flat your in.

I wonder why I bother being nice to them or make an effort to do things with them when all they do is moan at me

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2014-A Year in Review

So I looked back on my aims and well I failed most of them but this year has had its challenges and its postives. just 6 months ago I was fighting with myself to stay alive but now I want to grow old with someone. But that doesn’t mean I am cured.

I still do have severe mental health problems and there are days when I want to be in my bubble and not even Mike can get in but theses are less than the beginning of the year. I am achieving more in the day but still struggle with belonging in society.

I honestly can say I found the one I love and can’t spend more than the working day without him, he is the reason I am trying to get better I want to make a life with him. I do wonder though where our relationship will be next year in the ways of will we have our house together and where.

My asthma has been up and down though I have made no progress I feel I can start to trust my consultants and when in a comfortable environment that admissions can be manageable and less stressed. I do hope like every year that things next year will get better. Though I do have more answers the cure/management is yet to be found.

Family dynamics have changed I’m not sure if it’s me looking at the relationships closer or comparing it to other families. Or maybe they have changed I just don’t know what to think I just know it is hard and some days I do wonder if it’s worth me trying.

My weight hasn’t changed if anything it’s got worse I’m not making excuses but I didn’t want the extra pressure but now I think a certain person see’s it as I wasn’t trying. Weight loss on medications is almost impossible so I need to change my mindset away from pounds lost to the changes in me for example getting on my bike. The weight may come off it may not but who cares when someone loves you whatever size and your happy in your skin.

I have achieved some things; more modules of OU completed, my nvq is finished which means I have started to look for the right job, I have visited some lovely places and walked more than I have done for a while.

So as 2015 approaches who knows what is to come.

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