Support networks

So today, I wanted to write a post on the importance of having a support network, what it means and how it's helped me. I thought I'd look up the proper definition as a starting point but I'm surprised that when googling the term, very little comes back in the search results.

The Cambridge Dictionary states that a support network is: 

"a group of people who provide emotional and practical help to someone in serious difficulty"

I definitely agree with the first part about emotional and practical help, but I strongly disagree with the serious difficulty bit, perhaps because I'm still somewhat in denial about how well the word serious and MS go together.
Yes it is serious I suppose because it's not going to go away, but serious implies that it's very bad and something to be afraid of and I feel that it is neither. The snapshot right now is that MS is an annoying challenge that certainly has the potential to get pretty tough. But today things are positive and it's not impossible to live with, so I'm grateful for that.

Secondly, why should you have to be in "serious difficulty" to need a support network? I would love to say that I know someone who walks through life in one big happy bubble and has had very few challenges to cope with, but the reality is; that isn't what real life is like! Having multiple people from different walks of life to talk to and frankly help you exist, is super important. Surely you are more likely to get yourself into serious difficulty if you are just trying to "do it alone?" Just a thought.



When googling support networks as a topic, I found a really good advice page on a website that discusses "how to build a support network" building-a-good-support-network
This is all very well and certainly looks to be a helpful page, but it doesn't address the big issue of actually being brave enough to ask for support in the first place, or how to find it outside your close friends and family. 
What about those of us that struggle to ask for help in the first place? I personally find it VERY hard to ask for and accept help. I've had to become a lot better at it recently because I can't get better on my own and I can't expect Jonny to do everything either. However I have always found it hard because I don't like to feel like I'm putting people out, asking them to go the extra mile, inconveniencing them. I feel most comfortable when I'M the one doing the helping out and looking after. I adore cooking for people and some of my favourite recipes to cook are the ones that require hours of work in the kitchen, a pestle and mortar and the use of nearly every pot/pan/utensil that we possess. I am at my happiest when I have a full house of friends and family with matching dinnerware and glassware on the table, a bottle of something tasty in the fridge and a maybe a Tagine in the oven. As lots of people can probably relate with, I would always far rather be the provider of care or the helper than the help-ee. There is probably a better word for that, if not I'll be submitting helpee to the Cambridge English Dictionary later on...



Anyway, rambling on, so my recent experience of actually letting people in and letting them help me is a very positive one. In fact, I think really it's what has kept me going. My support network is pretty sizeable which is fab. It consists of various tiers:

• Immediate family - Jonny my husband. Two parents, a brother and potential sister-in-law, two in-laws, 3 brother-in-laws, a sister-in-law and Callie the cat. 
• Close family - literally too many to list, lots of lovely Aunts, Uncles, Cousins, 2nd Cousins etc and that's on both sides of the family. 
• Friends - school friends, old housemates, colleagues, church friends, fellow musicians, old teachers etc 
• Home group - see below 
• The online MS community 
• Fellow Lemtrada buddies 
• The ones that don't fit in a box! 

The last bullet point I should elaborate on. Something that is most definitely worth mentioning with regards to support networks, is the idea of having a total stranger to talk to. Admittedly, I realise that's actually what counselling is - someone who is detached from the emotion of being personally connected to you. Someone who will simply just listen, and actually when you really care for someone, that's super hard to do. It's hard not to automatically say "you'll get through this", "you're so brave/strong" or "it's okay". I'm not saying don't ever say those things, but when you're really suffering it's often the last thing you want to hear. I am a real hypocrite saying this, because I find this practically impossible to do when someone I care for or even a total stranger is upset. It takes real skill just to listen.

I may still go down the route of talking to a counsellor, but so far, the online MS community has worked really for me in that branch of my support network - a bunch of online strangers who I may never meet in person, who don't necessarily know the ins and outs of my life outside MS but who provide support and often have no choice but to wait until you've finished 'speaking' because you're writing posts!

The point I realised I had a need for this particular branch of the support network, was when I was coming to terms with my diagnosis and I think entering the grief stage. The idea of grieving when no one has died is tricky to understand and I can imagine for those that have lost someone, it probably sounds narcissistic of me to even consider using that word. But the definition of grieving is:


"Deep or intense sorrow or distress"


In my opinion, part of getting your head around being diagnosed with something that is never going to go away, is to grieve and this seems to be a thought echoed by lots of others dealing with the unexpected gifts life throws at you.

For me, grieving meant the most disgustingly unattractive crying I've ever done! We're talking proper movie style crying that is loud, messy, sometimes a little scary and you're torn between feeling ridiculous and riding the wave.
It sounds very self-indulgent and that's certainly how I feel sometimes when I'm really upset but I've learnt quickly it's also really important just to let rip, and for me that's nearly always in private. I felt like such a fool for wanting to speak to a total stranger when I felt like this, especially in the knowledge that I had such an amazing support network - if you've read the list above, I literally couldn't pack many more people in if I tried!
I can't explain why in that moment, I didn't want to share my grief with those that loved me. I don't feel ashamed, I'm perfectly able to (and often do) tell Jonny, my bestie Lea or my Mum when I've had a bad day. But talking with others in the same situation, who are taking the same treatment, and often sharing the same worries is super helpful. A problem shared is a problem halved is that how the old adage goes? Well in the Women with MS group there are over 5000 members and in the specialist Lemtrada UK group there are a further 900, so any small query that you might have, day or night is nearly always answered - usually by about 50 rather fierce MS warriors all at once!



The other bullet point I need to expand on is my Home group. For those of you who haven't clocked it yet I have a fairly strong faith. It's kind of scary to talk about it, because religion is a bit like politics - we've all got different opinions, sometimes rather passionate ones. But one of the biggest parts of my support networks comes from a group of people in the 20s-30s homegroup (which is starting to get slightly ironic as several of us are now on the wrong... sorry RIGHT side of 30).

To provide some context, I attend St Mary's Cogges (Cogges is a bit of Witney that has a farm, there are two St Mary's so this is how we separate the two - unfortunately something I didn't make particularly clear on my wedding invites which caused rather a lot of confusion on the day!)
Something that my church encourages outside of the usual attending a Sunday service stuff is to join what we call a home group. Yes folks, not only do I often endure 2 hours of God stuff on a Sunday, I'm bonkers enough to put myself through another 2 hours in the week. And I'd just like to put this out there, I was originally bribed into it with wine because it was a group that met in a pub (Pub Theology it was called!) which was great fun and involved lots of thought provoking discussions. Then before I knew it I was part of a group with the same people but hosted in people's homes which involved curling up on a different sofa each week having arguments about how realistic it was to actually feed 5000 people, and why were there so many prostitutes in the old testament. (Those were my first two questions, I dread to think what impression I gave in the first few weeks!)

Now I can imagine this may sound like a cult or something really drab to be committed to but let me explain what our home group is and WHY the entire group have been dragged into my support network. Every Wednesday I spend 2 hours with 11 other people at a different house each week (we all take it in turns to host because can you imagine having to keep the living tidy on a weekly basis? No chance!) and we spend time catching up, praying for each other and when we're focussed enough - trying to decipher what on earth some of the bits of the bible are going on about otherwise known as a bible study.

I was INCREDIBLY skeptical about becoming part of a homegroup as I am terrible at committing to anything on a week night that isn't work related, and I do also have a bit of a love affair with my very comfy sofa and a large glass of wine, (yes even on a weeknight, you'd need one too if you taught quadruple KS3 on a Thursday trust me.)

Anyway, I'm pleased to say that with our Homegroup it's not been the scary commitment I thought it would be. No one hunts me down if I have too much work on to turn up, no question is too silly and there has only been one occasion where I "couldn't be bothered" to go and I felt sad to have missed it afterwards. I haven't known the people in my Homegroup for long, some for 4 years, some only for 1 or 2, but we are all at a similar stage of life and meeting up on a regular basis provides a really unique level of support. We share and pray for some fairly classic worries for our age group like career changes, saving up for houses, relationships with colleague/friends, politics, whether or not we'd ever fit a dishwasher into the kitchen etc. Then sadly sometimes our attention turns to the more serious worries like the health of loved ones, each other's personal battles, looking after and providing support to those suffering loss - basically the whys and what ifs. It is a real comfort to share in both each other's good news and bad news and to offer advice and support. I feel like I've made us all sound like very mature adults but in reality things also often descend into chaos and 40 minutes of our time spent together will involve very high end conversations like "How many plastic balls would we buy in order to turn someones living room into a ball pit?" and "How much would it cost to rent a castle for the weekend" - an awful lot but there are several on Air BnB if anyone has a need.


Anyway I digress, the other ways these marvelous people have helped me is to support me in whatever way they can. Providing meals for the freezer, sending flowers, providing fun activities for hospital, sitting with me all day during my treatment, helping me organise lifts to hospital and basically letting me cry, whinge, rant and inundate them with prayer requests for simple things like getting the darn cannula in first time! Something I'm also proud to say is that for a long time, they have no longer been just people from church, they're also very much my friends.


Speaking of friends - last little bit to add! I have two super besties who I don't get to see often but thanks to social media, we communicate daily. Despite what I might sound like with all this "I'm a member of this facebook group" blah blah blah, I promise I'm not a social media addict and I don't like it that much because of the impact it has on our young people. My current soapbox topic (of which there are several) is that I really don't like how social media has changed our society, particularly with regards to causing anxiety and the desire to gain "likes". That's a rant for another day though. 
What I do like, is how well it connects me to the members of my support network who live at what feels like the ends of the Earth - in reality this is my two close friends Lea and Cat who live in Yorkshire and Suffolk respectively. We communicate on WhatsApp, and it's particularly lovely because Lea is mum to my Godson and she regularly posts pictures of his latest antics and his little brother too. Luckily we do get to meet up once or twice a year with husbands in tow and it usually involves a weekend away to set the world to rights whilst bathing in a hot tub, brill!


So, to summarise: support networks rock, social media isn't always awful and I've finally worked out how to change the settings on the blog to allow comments without anyone having to create some random profile - Sorry Kathie and Aunty Janet T!


C x

2 Weeks post treatment - cabin fever kicking in!

It is officially two weeks today since I finished my Lemtrada treatment and I'm pleased to say that I feel that I am doing better than expected.

In my opinion I've had very few side effect symptoms since the treatment stopped, for which I am really grateful. 

The first weekend after treatment I slept through nearly all of both days, I was awake for roughly 6 hours each day and that was in-between cat naps! And boy did the sleep feel GOOD. In hindsight, I wish that I'd been able to sleep more in hospital as I think it would've really helped. My lem buddy Pete wore noise-cancelling headphones to ensure he could listen to music and get some good cat naps in. Jonny is now lusting after a pair of these and so am I because they seem like such a good idea when you're trying to sleep on a noisy hospital ward and your ear plugs keep falling out.

The first week of recovery at home featured lots of tiredness and feeling a bit like I'd been hit by a bus, simple things like showering absolutely floored me for the first few days but then actually, I've been used to that kind of fatigue coming and going over the last year and it certainly wasn't anything that worried me. Fatigue is a classic MS problem and is another thing that can't be predicted. Some days are totally normal and other days I have to rely on Jonny to wash and blow dry my hair for me. On those days even finding the energy to lift my arm above my shoulders to brush my hair can be hard, which is super frustrating but I think Jonny must've secretly wanted to be a hairdresser because he seems to love doing it for me bless him! 

That level of fatigue used to upset me a lot, but luckily it hasn't been an issue for the last few months. Frustratingly my hair is actually thinning post treatment but on the flip side, I still have A LOT of hair thanks to my Welsh genes. I've also got a few friends who seem to be experts in hair care who have recommended all sorts of things to keep me looking like cousin IT. Picture below for those of you that are too young for that reference. I'd like to point out that actually, I'm also too young seeing as the TV series started in 1964...

 

Other new post-treatment symptoms I've had to get used to are night sweats which, sorry to gross you out, should really be sponsored by Persil or Ariel and renamed "night waterfalls" because I now seem to sweat to the point where it's like someone has thrown a bucket of water over me and bedding and pyjamas end up being washed daily, argh. Good practice for the menopause I suppose! 

I've also developed the ability to get chilblains at the drop of a hat, probably from not moving around much as they're usually caused by poor circulation according to Dr Google. I can be sat happily reading a book, feeling normal when boom! My fingers and toes become itchy, hot and swollen within a matter of seconds. Luckily I have a rather large supply of piriton thanks to the goodie bag of drugs I was sent home with when leaving hospital, so the chilblains quickly disappear within a few minutes, phew.

Once of the most enjoyable side effects from the treatment is the steroid munchies, which have been fairly prolific. I suddenly get urges to eat everything and anything although I must admit I mainly have cravings for sweet things so chocolate is high on the binge eating list - swiftly followed by bananas thankfully. I seem to have a normal appetite for meals but the snacking in between is getting a little out of hand. I honestly feel a bit like Augustus Gloop from Charlie and the Chocolate Factory sometimes. Thankfully my weight has stayed mostly the same despite this, I'm fairly sure that I probably lose half a kilo each night from the night sweats, only to put it back on during the day! Don't try this at home folks, this is not the latest fad diet.

Last super thrilling symptom and the one that is the most annoying is shortness of breath. This seems to come on both randomly and after physical exertion, which in my case is mostly just running up the stairs these days. I can't predict the pattern of it yet which is annoying. For example, I can talk on the phone to Mum for 30-40 minutes and feel fine, but when Jonny comes home from work and the verbal diarrhea kicks in, I run out of breath after about 10 minutes of talking. Perhaps that says more about Jonny's ability to get words in edgeways than the actual perceived randomness of my shortness of breath! Either way, it's a little odd. I've been given an inhaler by the hospital which I use when desperate but I'm not hugely keen on relying on it. Deep breathing helps A LOT, the difference in my breathing after taking 30 focussed deep breaths is huge. I can only describe it as feeling like the air isn't going into my lungs but is coming out fine, or feeling like I'm breathing in "thin" air. After deep breathing things feel more normal. 

I have also started trying to make sure that I'm moving around regularly for short periods of time. I've been taking 20 minute walks around our housing estate and more recently I've been reacquainting myself with the wii fit, how very retro.

I can't really remember how long I've had it for, but the wii came out in 2006 and I remember that I bought it with some of my pit band earnings (I should elaborate, not as in coal mining, pit as in theatre pit) whilst at uni so I think I've had it for roughly ten years. I clearly hadn't used it for some time as the moment I got on the wii fit board it genuinely said "Is that really you Claire? You seem a lot heavier than the last time you logged in!". SCREW YOU WII FIT! To be fair to the pesky thing, according to my user profile when I last logged in (6 years ago it reckoned!) I had apparently weighed 2st less. 

Pfft. I shall not be bullied by judgmental technology!

So officially I have one more week to get this breathlessness problem sorted before I go back to work. I am super keen to get back in the classroom but very mindful of the incompatibility of being breathless and a music teacher. I'm hoping to keep getting myself up and about a bit more so that my stamina improves enough for me to be able to holler over the cacophony of 30 xylophones and remain standing up at the same time. Simple pleasures really!

I also hope to be out and about a bit more from this weekend onwards, as although the risk of catching everything and anything germy is still high, I'm not quite as terrified as I was before. Jonny unfortunately caught a cold at the end of my first week which threw us into chaos, but thankfully after being banished to the spare room for a week and my slightly OCD cleaning routine with door handles, towels, bedding, cushion covers, (you name it, I've washed it twice this week) I am pleased to report that so far I have not caught the cold! Woohoo! Who needs white blood cells?

C x