Glowing Report!

I'm really happy to say that yesterday my lung function was 49%, my weight 55.8kg and my oxygen saturation (sats) levels were 99%! I can't remember the last time I saw figures like that, for months and months now my sats have sat at 93-95% and that was just normal for me, sometimes getting even lower when I felt unwell. So to see them at a normal number is great and for my lung function to be almost hitting 50% is amazing. My weight is back to pre pneumonia 2011 weight, it just shows how long it can take to put that weight back on once you lose it. I have started a 10 day course of IVs which sounds stupid given the numbers, but I have felt a bit iffy the past week or so with my energy levels and I started to develop a tickly cough and chest pains so decided I wanted to have some before we start fertility treatment again, rather than possibly end up needing them half way through.

So what I have been doing differently? Well I believe the main contributor is my new nebulised antibiotic Azli, also known as Cayston, also known as nebulised Aztreonam. I had high hopes for this nebuliser as lots of people have said how amazing it is and I believe them now! At first it made me really wheezy however that went after about 10 days, it does re appear every so often though. Then I started to be able to exercise more than usual and before I knew it I was going to the gym 3 times a week and doing 40 minute sessions involving about 25 minutes cardio and the rest doing weights. I'm feeling I can really push myself at the gym at the moment and I've noticed my heart rate has decreased too, my pulse at rest is in the 80s at the moment, I pretty sure it used to be about 100. I am still very breathless when exercising however I do have less mucus which is what the physio believes has helped bring my sats up and why I think I a finding the gym less hard work.

Then I have also started having insulin with lunch and tea and although I still need to learn how many units I need and not getting it right all the time, I'm getting there slowly. I'm having 2 units with lunch and 3-5 units with tea. I'm having lots of hypos (low sugars) which is not nice, basically every time I exercise and if I have breakfast early or tea late. It's easy to say, well eat your tea earlier or have breakfast later, but that isn't always possible!

So health wise I am doing well at the moment which makes me realise how important it is to be compliant with treatment and to be involved in your CF care. I know for a fact if I worked this would not be possible, I haven't worked for about 5 years now and I'm finally starting to feel I understand my CF and know what my body needs and I'm getting the balance right of rest and treatment. Some days I am so bored and fed up, I feel so useless and pathetic that all my day consists of is CF related activities and attempting to do household chores which mostly Pete ends up finishing off anyway!

I look back to when I first joined the CF community, my health was worsening and I was facing giving up work. I made lots of friends on-line who I felt understood me better than people around me, it was also when I started to take an interest in my health and ways to improve/stabilise it, can you believe I didn't even used to wash my nebuliser equipment?!

Lots of my friends have now either had lung transplants, need lung transplants, have passed away or their health has deteriorated. People that had the same lung function and health as me are now needing lung transplants which scares me but also makes me feel proud that I have managed to avoid this so far. CF is unforgiving, I work really hard to stay stable. I'm not admired or called brave, nobody calls me an inspiration, because in order to be those things you have to push yourself to work a full time job or go above and beyond what your body is capable of and I'm not willing to do that in order to end up dead or dying like lots of people with CF do. Lots of people probably think I'm lazy or one of those scrounges you read about in paper, on benefits, didn't you know the whole country hates people like me at the moment? Sometimes I feel guilty if I go out for a meal out as the papers make me feel like I shouldn't be able to afford my electricity and gas, never mind a meal out, because I am in receipt of benefits. However then I remember my husband does work, so we are not complete scrounges...!

Having CF at my level of CF is a job in itself, I have to do a hell of a lot to stay alive, some people with CF don't, they manage to get on OK with minimal extra effort. I'm not implying that people with CF who did push themselves are in the wrong, or that everyone who needs a lung transplant brought it on themselves. It's such a fine balance between having a life and looking after yourself, nobody gets it right and even if they do sometimes there is nothing anyone can do to prevent that downward spiral, I'm sure it will happen to me eventually. I just feel lucky that so far I'm doing OKish, I have a supportive husband to help me and I'm in a situation for the time being where I can concentrate on my health and not have to run myself in to the ground with work. This might all change through if I don't qualify for ESA though and that is why I am really scared of what may happen in the next few weeks. I really wish the government and society as a whole understood long term conditions more accurately.

The Dreaded Diabetes

I officially have CF related diabetes, lucky me! I was admitted in to hospital last Wednesday to start insulin treatment and stayed in just the one night which was long enough, I swear its enough to make you go crazy. I don't want to be nasty about my CF team as they are brilliant but staying in hospital is hard work as your routine is totally ruined and you are constantly waiting for people to come see you and do not have any idea when they may come in which makes it difficult to do your treatment or get a shower or get breakfast etc. I woke up at about 7.30am and nobody came to see me until at least 10am, I had no idea if I should get my own breakfast or if I was going to be offered a fry up (they do provide fry ups), if I needed my blood sugars checking, if a physio was going to come and see me since I wasn't in because of my chest etc, its just difficult for someone like me who likes routine and to plan the day ahead. Then when someone came to see me she asked me if I wanted breakfast, (erm no its 10.15am I went and got myself some ages ago...) I got in trouble for not having my blood sugar tested beforehand which nobody had told me I needed to do!

So I'm home now and doing OK with the insulin. The needle is 5mm so small compared to the fertility injections I've done in the past and I'm alternating between injecting in my thigh and my stomach. At the moment I'm having insulin with my lunch and tea. I started at two units for both which is a small dose but I've now upped it to three or four units with my tea. I'm having to take my blood sugars before every meal and an hour and a half afterwards plus any time I think I'm having a hypo (where your blood sugar goes too low) which is quite often. For example on Tuesday I had three hypos! I have to learn to recognise hypos as you are not allowed to drive when having one and they can be dangerous if not treated. It's quite easily really since I can't see, concentrate or think properly when having one and I feel shaky and dizzy, so I wouldn't want to drive when having one anyway! I've had to contact the DVLA to let them know I have diabetes and have filled in a form for them regarding my treatment etc.

I remember not understanding why people with diabetes have hypos as isn't diabetes when your blood sugar goes too high (which is called a hyper)?! Well diabetics get both, the aim is to try have blood sugars between 4-7. Hypos can be caused by the insulin injected and then also my body creates insulin at stupid times when it shouldn't, like 2 hours after I've eaten. Also exercise (which can be just walking or rushing around) can cause hypos and not eating for long periods of time. I seem to always get them when I have breakfast really early, for example I had breakfast at 6am yesterday and by 8.45am I was having a hypo, it's totally stupid and so annoying especially when I'd had porridge which is supposed to release carbs slowly!

I'm not enjoying have to do blood sugars and insulin when eating out, I seem to have so much stuff to pack when ever I go anywhere. My bag is just full of tablets and snacks (to treat hypos) and needles etc. Then if I have a dress on I have to go to the toilet to do the insulin as I don't really want to be pulling my dress up in front of everyone!

I'm also doing Azli (Cayston) nebulisers in replacement of Tobi, which is three times a day and I've started doing my hypertonic saline three times a day when I can, as my chest is always really full of mucus by the afternoon. So I have to plan for that as obviously they have to be spaced apart and I'm starting to get really frustrated with how much I have to plan and prepare to do anything at all! My whole day seems to be CF related and I'm really feeling fed up.

So in a day I am doing nine nebulisers, two lots of physio, insulin and at least six blood sugar readings, all my daily tablets plus tablets whenever I eat, having to treat regular hypos and trying to go to the gym at least three times a week. Thankfully my weight is great at the moment (55.5kg) so I'm off supplements for now!

I am also having to apply for ESA (employment and support allowance) which is the replacement for Incapacity benefit which is the benefit you received if you are unable to work due to a medical condition/disability. So instead of just moving me over they are making me apply for ESA and I am terrified I'm going to lose this benefit as I've heard the assessments are unfair and they just assume you can do something on a regular basis if you don't mention it or do it once. Examples of some are the questions are 'can you lift your arms above your head', 'can you pick up a penny', 'can you cut up your food', 'can you learn new tasks' there doesn't seem to be anything about having low levels of energy or having a heavy treatment regime to fit in your day however there is a section on walking which seems more appropriate for my condition. Anyway I've done my best to tailor the answers to the questions to cover my illness and will have to hope its enough.

I asked the doctor I saw two weeks ago to write me a letter of support and she referred it to the social worker who I never see so not sure why she did that, so she wrote me a letter which if I'm honest was pretty poor, I think it was just a standard letter, after all she doesn't know me. She put I did my treatment 'most days' and I go to the hospital to be reviewed every 6-8 weeks which is totally untrue, at the moment it's once a week! So I have asked a different doctor who knows me better to write me a letter which I haven't seen yet but I'm hoping it's more helpful. I need to post the form today as they only give you three weeks to get it all filled in and get your support letter and it needs to be there on Monday, so Pete is having to drive to the hospital to pick up the doctors letter. So I've been rather stressed by it all!