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.

Wedding Fayres

So we have been to a lot of wedding fairs and found them all really useful an got something out of most of them. Its a good chance to met suppliers rather than just picking one off the list.

My advice for going to a wedding fayre

  • Go with someone preferably the groom
  • Know what you are looking for
  • Have a separate wedding email as you get allot of emails
  • When talking to someone be direct with your questions.
  • Try every sample food you can
  • Take pictures of the things you see you like
  • When at home go through the cards and leaflets and chuck any you aren’t interested in
  • Write reminders on who they are on each card
  • Remember budget
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Finding A Wedding Venue

So we are getting married! Mike’s brother is getting married in 2018 so we had to get married in 2019 at the earliest. I wanted a summer Saturday wedding, I decided 20th July as would be 5 years to the day of our first date. We had decided we wanted a safari honeymoon and our original favourite venue was Bristol Zoo to fit in with the honeymoon. Advice always go to other places including different styles and different price ranges and then you know what you fit best into and what you can get for your money! So spreadsheet out and compare prices.

Cumberwell Park- This was the first venue we went to and liked it but was very much this is the room, this is it.

Bristol Zoo- Lovely venue but too close to the zoo and the people, walking around for photos in the height of summer we would not be comfortable. It was a real shame

Bowood Hotel- we went in thinking we couldn’t afford it and when the sums were done we could so was marked high on the like.

Homewood Park- This was the venue I wanted to get married as a child. We got a quote before we went and knew we couldn’t afford it but looking around we loved the bedrooms but not the room you get married in

Wick Farm- We hadn’t thought of a barn wedding but this was a different style we thought was worth a look. They were setting up for a wedding and we liked the style of it but was too expensive.

Widbrook Grange- This was my mums choice but we went there and with our numbers it was a squeeze. Not for us!

Guyers House- Too many little rooms and expensive for what you got

Matara- We feel in love with this venues main room but when we went there they pushed the outside parts and we decided it wasn’t for us

Beechfield House- We were shown around here not thinking we would like it and we like the room and liked the hotel.

Priston Mill- This place has 2 venues a watermill and Barn. we loved them both but the watermill fitted better in with our numbers and was unique

Advice: Go back a second time with others

We had arranged with Bowood and Priston Mill to go back for a second time. last minute we changed it to Beechfield house. Our parents came and seeing each venue a second time we had differently feelings about it and cleared our minds that we wanted to get married at The Watermill, Prison Mill. Now booked and deposit paid for!

 

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Catch Up

So I haven’t written for a while as I didn’t feel the need but now I have a urge. Firstly lets update you all

Asthma- I haven’t had a hospital admission in over 18 months. Im off pred. My nebuliser machines have collected dust. I do go through inhalers. I have only really had problems when I have a cold! Been discharged from my consultant in Bath but continue to see Southampton

Life- I now have a full time job which I enjoy. Myself and Mike have brought a house together and are slowly giving it the love that was missing as was rented before. on the 16th July 2017 whilst having a weekend away camping Mike propose to me on Shell Beach, Studland. he had a poem and I didn’t realise what he was doing until he went into his pocket for the ring. I love my ring! We are planning our wedding so going to write some posts about that.

Open University- Ive graduated, I have BSc(Hons) Open Studies and Certificate in Public Health… thinking of doing a Masters

Depression- Well the last year has been hard. I started to be little low and was seen by primary care liaison (PCLS) in December who made 3 recommendations, one I had tried myself and the other my GP didn’t want to prescribe. So I tried the one option that didn’t help. So back to PCLS who changed my antidepressant and disagreed me, It didn’t really help. After much pushing I was started on Lamotrigine just before going on annual leave. Over the period of leave things got worse and worse and the night before returning to work I flipped, I trashed the house looking for my supply of zopiclone to try kill myself. Mike phoned Crisis Team who said speak to my GP in the morning. I was still trashing and Mike restrained me. I wasn’t calming down. He phoned the police. When he let go of me to let them in I went for the window as the police got upstairs i was just about to jump out. The police managed to calm me down. The street triage were useful and got my GP to give me Diazepam. The following day I went to the road and tried to run out, police called again. I then stated to cut myself. I cut my left groin and needed 19 staples. Crisis team came and admission was discussed. I was admitted to Fountain Way on the 28th July 2017, I was stuck in a room and almost forgotten about. My anxiety was high that I couldn’t leave my room. No one was telling me anything. I had an infection in my groin and they took me to ED and the staples were removed and stitched back up. I discharged myself on the 2nd when I finally had a meeting with the consultant who said I am not going to offer you anything just some one to one to cope with your anxiety. I was back under crisis team and lucky the lamtrogine was stopped. I went on to cut myself twice more and police called once more. When I saw the consultant for crisis team and they said “well you need talking therapies and we can’t offer you the therapy you need” I went home and cut my right groin again. This was  stitched up on the Thursday night. Saturday night went to MIU as was infected,  by Sunday evening was really painful and the redness had doubled in size despite being on Antibiotics. I was went to ED and as soon as the Dr saw me it was a “gosh” quickly surgeons saw me and decided I needed to go to theatre now this was a 3am. I had necrotizing fasciitis. I had never been so scared they said the worse is that I loose my leg and they weren’t sure if I would be woken up after or not. Lucky with 4 different antibiotics in my system sepsis was avoided. I had to have another surgery to remove more dead tissue and was left with a 21cm long hole in my groin. I am still coping with the effects and having 3 times a week dressings. My head now was doing alright now its more down than normal. I am currently taking Mirtazapine and quitapine for my depression with pregablin for anxiety. Im still off work which is a stress as Im only on sick pay. I am having to dig deep to get through. I live in my bubble.

 

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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

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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Normal

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.”

Pixabay
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

https://www.psychologytoday.com/blog/turning-straw-gold/201403/the-extra-burdens-faced-young-people-chronic-illness

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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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Lazy

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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