Making and meeting internet friends

Due to the risk of cross infection is is not advised by the medical profession for people with Cystic Fibrosis to meet up together (one of the plus sides of this was that Ga always got his own room in hospital and hence we had elongated periods of privacy when he was admitted). Therefore the Cystic Fibrosis Trust internet forum for teenagers and adults with CF is very active. The Partner’s forum, not so much, but there was enough activity on there for me to get a positive response when I suggested a CF Partners meet up (there was no infection issue with that!)

Initially 4/5 women were interested in meeting up, and we arranged a mutually convenient date to meet in Covent Garden, London. I booked my Megabus ticket in anticipation. But in the end people dropped out (for valid reasons) and only one other person was coming. Ironically she hadn’t posted on the forum much before so was someone completely new to me. In the few weeks between arranging to meet up and actually doing so we tentatively  progressed to exchanging longer and more detailed emails about ourselves, our men and our lives… and realised we had a lot more in common than just CF!

You know how with some people you just click? You only have to know them for a very short time before you both feel comfortable to completely be yourself and open up your innermost thoughts to them without fear of rejection or misunderstanding? Well through those emails I was beginning to think I’d found such a friendship. We wrote about what books we were reading (she was a bookworm like me), our experiences of working in the NHS whilst being inextricably linked to CF at home (she was a physio), walking holidays we’d been on, the different stages of DIY we were doing in our respective houses. We were surprised to discover that some aspects of her Dan’s CF care and treatment were different to my Ga’s, such as Dan had home IVs already made up, whereas we drew them up ourselves. We compared our men, and discovered they both had similar attitudes, in not really wanting people to know about their illness and not letting it stop them doing what they wanted to do. As we progressed to becoming Facebook friends I discovered photos of them both skiing and she looked at links to Gareth’s Africa photos.

And then the day came to go to London. Even though I was pretty confident I knew she wasn’t some crazy person, I was still glad our first meet up was in a public place and informed Ga of when he should expect to hear from me! As I made the 4 hour journey to Covent Garden I was full of excitement, anticipation and a lot of nerves! I couldn’t sit still as I waited for her to arrive in the pre-arranged restaurant. Even though I knew what she looked like I placed my white scarf distinctly on the table for her to recognise me with. And when she arrived, I was so nervous and self aware I’m sure I jabbered on and on for quite some time!

As we spent more time together we both got over that initial nervousness of the first meeting and talked and talked and talked. We talked as we ordered and ate lunch, as we walked around Covent Garden shops and when we found ourselves sitting on some steps watching the bustling crowds go by. For about 5 hours we didn’t stop talking! There was such a subtle yet immensely significant difference in talking to this woman who just ‘got’ what I was saying and didn’t need the explanations and descriptions of situations and feelings as my other wonderful, but non CF-affiliated friends did. Where her natural responses weren’t instinctively ‘sorry that’s so hard for you’ but without batting an eyelid followed on with her own experience of that very same issue, which would then lead me to remember something else related to that and share that experience with her, and so on and so on. Where in the midst of talking about very serious and difficult situations, we would find humour and laugh about certain aspects of them too. Where we could admit our struggles and deepest fears of the future with each other and not feel so uncomfortable that we needed to change the subject. Where we got to share in how many ways our men were so wonderful, kind, funny and inspiring to us.

From the very beginning my friendship with Mary had a uniquely equal balance to it, one that I found I had been gradually losing with other friends, as I increasingly became the one who was taking more support from them than was giving back. Mary and I gave support, and received support from each other in equal measure. As we left for our prospective long journey’s home (after helping Mary buy thermals for her upcoming walking holiday!) I knew that something fundamentally significant had happened that day, and our friendship was now so strongly glued together that she would be an important and special friend in my future for a very long time to come.

NB And I’m happy to say that 4 years on she still very much is : )

Cystic Fibrosis; Reality hits home.

Valentines Day 2008 swapped plans for a romantic walk and pub lunch for a chest drain insertion in A & E and hospital food, as Gareth developed a spontaneous right pneumothorax (collapsed lung). He rang me whilst waiting for the ambulance and I met him in the emergency room.  I sat next to him as a team of doctors inserted his first (of many) chest drains (similar in size to a garden hose pipe). I helped readjust the oxygen mask over his face. I explained to him what was happening and why (to the best of my nursing knowledge). I reassured him when he was frightened and held his hand when he was grimacing in pain. I got used to sitting in a hospital chair next to a hospital bed.

The chest drain was inserted successfully and Gareth admitted to a ward. The drain was on suction for the majority of the time, which was attached to the wall so he couldn’t go very far. It took several weeks and numerous chest drain insertions to finally enable his right lung to re-inflate adequately and for him to be discharged. Yet three weeks later his right lung collapsed again and he was readmitted and needed even more chest drains. It got to the point where it was decided he would have an operation to surgically re-inflate his lung and was transferred to the hospital I worked in. I would visit him during my breaks when I was working shifts. The operation was successful and eventually he was discharged home to recuperate and build up the weight and strength he had lost. Due to the amount of time he had been unwell and the lengthy recovery period needed, Ga made the difficult decision to not complete the first year of his Documentary Photography course and restart it the following September. He had also been unable to attend a university educational trip to New York, which he had been incredibly excited about, and had already paid the non-refundable cost in full.

That is the gist of what happened. Obviously I have so many specific memories from that time, both heartwarming and painful, but it gives you the picture. It took eight weeks for Ga to recover physically and be discharged  after his initial lung collapse. But it took much much longer for either of us to recover psychologically.

I sit hear re-reading the above as a qualified nurse and think it must sound a bit extreme. When I think about it objectively, Ga was stable throughout his admission and if I’d been the nurse looking after him, he wouldn’t have been a patient that required vast amounts of my attention, and I wouldn’t have been unduly worried about him. But he wasn’t my patient. He was my fiance. He was my fiance who had cystic fibrosis.

And that changed everything.

I think the reality of the seriousness of his illness hit me during this admission… and truth be told, where in my limited knowledge of CF, and sudden exposure to Gareth being acutely unwell and distressed because of something associated to his CF, my mind went into overdrive, worry and distress myself, to the point where it even crossed my mind ‘would he make it to our wedding in 5 months time?’ (which in reality of course he would!). Thankfully I had good friends surrounding me, being gentle at times, but also quite firm when I needed to get a grip and pull myself together. And me and Ga continued to talk and share about how we were feeling, and it was good to have each other to lean on.

Over those eight weeks I learnt a lot about what marriage with CF would require of me…

When Ga is admitted to hospital (which may well be a regular and unexpected occurence) I would become an extension of himself… liaising with family, friends and university lecturers about his admissions, condition, progress and when to visit; coordinating and changing plans made that can no longer take place; being his arms and legs to run errands for him, bring in stuff he needed, wash his clothes. After God, I would become his main source of comfort, reassurance, sounding board, strength, entertainment and joy during his hospital admissions. My life would temporarily and suddenly shrink and be based mainly around the hospital I work in during the week and the hospital Gareth was in on my days off and in the evenings.

I learnt some hard personal lessons too. I learnt that although I don’t have the physical illness myself, the stress and emotion of watching the man I love dealing with the consequences of it will take its toll on me. When I’d leave him at the end of visiting sometimes I’d feel so physically and emotionally drained I felt as if I too had gone through what he had. And he would know that, without me needing to say anything and would be upset at how his illness affected me. After much persuasion from close friends I took two weeks sick leave from work, as up until then I had been trying to balance my job as a surgical staff nurse alongside visiting and supporting Ga, It was hard for me to admit I couldn’t do both and for a while left me feeling guilty. Then I joined The Cystic Fibrosis Trust forum for partners with CF and was given invaluable advice from them. Firstly, to be able to support Gareth as best as I could I needed to look after myself too. I felt incredibly guilty if I was at home resting, spending time with friends whilst Gareth was in hospital but came to realise that it was vital I took that time out for myself, to rest, recover and regain strength to be able to be strong and supportive when Ga needed me to be. And my lovely Ga knew it too, and would always encourage me to have that time away, even when he personally would have preferred my company in his hospital room. Secondly, whilst Gareth needed his support network whilst he was unwell, I needed mine too at the same time. I learnt to ask for help. Whether that was a friendly ear,  a shoulder to cry on, or a meal cooked for me so I didn’t have to think about doing it myself.

As hard as it was during the tough times, I can say with absolute certainty that there was no where I’d have rather been than by Gareth’s side throughout it all. And in the middle of all the hard stuff we made sure we had lots of nice chill out time together and found ways to amuse ourselves. In this admission a lot of it was spent making preparations for our upcoming wedding.

NB: This photo was actually taken at the same time as the previous post’s (when we were laughing and joking about me taking his blood). It looks much more serious though, which is why I’ve included it here, but in actual fact just shows me biting my nails out of habit as we wait for Ga’s nebulised treatment to finish (and he could talk again). I remember him teaching me about how photos don’t necessarily always portray an accurate picture and can be taken to make certain statements, and then thinking this picture was a good example of that. In time Ga became passionate about taking photos in full 360 degrees and I think one of the reasons he did so was because nothing could be hidden when everything in the scene is in the shot.