Life Updates and Good Stuff!

Sorry to have left writing another post so long. Things have been busy around here. Lots of (mostly wonderful) changes lately. Here is what's been going on:

I moved! I've been wanting to change where I lived for awhile for lots of reasons. Not least of which was that where I was living did not work well for my health. On the one hand, I was really lucky that I was able to pretty easily make it wheelchair accessible, but it was also up a big hill that was difficult when I was walking and scary going down in the chair. It was far enough away from the bus stop that if I needed to walk to the bus, that was itself a major task. That walk in particular was a big part of why I had to go part-time with my placement. A friend who is also a wheelchair user was looking to move and since we had similar access needs we decided to look for a place together. The timing worked out well and we found a place we both loved pretty quickly. I can't even explain how much better this living situation is. I think I was unaware until I left how much energy I was wasting on living in a place that really wasn't suited to my needs. The new place is ground floor, level access, in a lovely and flat bit of town and much closer to a bus stop. Plus it's just generally a much nicer flat than where I was living. The moving process, which I was really worried about, ended up being a breeze. Between me and my flatmate, we had 12 people helping us on moving day! I felt so cared for and supported :)

I went to a conference in a totally different bit of the country! For months I'd been planning and getting excited for the Social Work Action Network conference in Durham. I knew it'd be a major stretch for me physically, so I planned very carefully. I booked accessible accommodation on campus so I could get back to my bed easily when I needed rest, I carefully planed the journey there and back and I reminded myself that just showing up was a big accomplishment. I had a fantastic time and was incredibly pleased with the degree to which I was able to participate. Projects have grown out of bits of the conference that I was involved with; those are exciting, too.

I finished placement! I made it to the end of my final social work placement. That feels like a really massive accomplishment. I spent a lot of my placement figuring out what adaptations I needed to manage my health alongside the work and I'm coming out of it with a much clearer sense of what I'll need manage a social work job alongside my ME.

I got a job! I've been offered a social work job with one of my local councils. This is very exciting a huge relief! They even seem really on-board in our discussions about the adaptations I'll need in terms of working from home and such. I'm still applying another local council as I'd rather work in that one but having the back-up offer is a huge load off.

Things have finally slowed down! For the next month or so I'll be working on my dissertation and a final presentation. Those feel well in hand and can both be done largely from bed which means my body is much happier with me at the moment. Having the ability to work entirely from home and on my own schedule is basically an ideal situation for someone with a fluctuating chronic illness like mine. If I need to rest, I do. If I need to write a day off, that's ok. I take 2-3 hours off in the afternoon, which just wouldn't work in an office. I can work lying down rather than sitting up, which makes a significant difference. This new flexibility also means I've had time and energy to do social things and work on projects that I love but which have been sidelined for the past year. I'm cooking again, I've been out with friends and to a music gig and I have managed in-person grocery shopping. Normal stuff to lots of people, but doing those things is seriously exciting to me at this point! After my final hand-ins for my Uni work, I'll have at least a month off (probably 2 or 3) before starting work. I'm really excited about what I'll be able to do with that time :)

So things are good at the moment. I've made significant progress in adapting major areas of my life (housing, work, mobility, etc) so that they work as well as possible with my health issues. I know starting a new job will bring new challenges, but for now I'll enjoy this in-between bit!

Things You Can Do to Include Friends Who Are Ill or Disabled

 Like most people with ME, my social life took a big hit when I got ill. By the time I get home from work most days,  I definitely don't have the energy to do stuff with friends. I still do manage to see friends sometimes though and I'm incredibly lucky to have a group of friends who do everything they can to make the stuff we do as easy on my body as possible.

I figured it might be helpful if I made a list of things that you can do to help include your ill/disabled friends in social activities. The list is probably particularly relevant for people who have illnesses like mine,  but I think it would also work for people who struggle with any number of other disabilities. If you're ill/disabled yourself and you think this list would be helpful to pass along to your friends, you're very welcome to do that!

Here we go:

1. Understand that any plans we make our provisional. If we cancel at the last minute it's really not because we don't want to come; it's just that we can't today.

2. Getting places is often hard for us.  For those of us who are wheelchair users, access can be a big struggle. Ask us what we need in terms of access and if it all possible try to plan events in venues that we can get to and get into. (That means thinking about things like: how close is it to the nearest parking area, are there stairs on the way in or inside, is it near a bus/train stop, is there disabled toilet, etc.)

3. By far, the most helpful thing for me in social situations is knowing that there is a place where I can go and rest if I need to. So, whenever we have things at my house, I make sure that there is a bedroom where I can go and lie down if I need a break. I think that should be a totally standard thing at parties! Providing a quiet place where people can go and rest and not be bothered by other people would help people with all kinds of disabilities-- and people who just want to get away from everyone else for a little bit ;-)

4.  Make sure we have a place to sit that works for our bodies. Any party where everyone is going to be standing up and I can't count on there being chairs is a no go for me unless I go in my wheelchair. For a lot of people with pain conditions, a particular kind of chair is useful. I have a friend who finds that a beanbag it is one of the few places he can sit for any length of time. Inviting him to bring the beanbag to a party would mean that he's able to be there in less pain. Or, if I go out with him to a café and there are a couple different kinds of chairs, I'll simply ask him which one would be best for him. We know our bodies and what works for us and what doesn't, so just ask.

 5. If where we can sit is limited (for example the wheelchair space in a cinema), please sit with us. Nothing sucks more than spending your precious energy to go out to do something with the group of friends and then ended up having to sit away from them or being shuffled off into some corner while everyone else enjoys being part of the group.

6. Keep inviting us. We probably say no to a lot of invitations, but please don't let that make you think we would rather not be invited in the first place. It's nice just to know that you still want us to come along. And on the occasional day when we can do something, it's great to be able to take up the invitation.

7. Let us know, in detail, what the plan is. Everything I do has to planed quite carefully and my physical impairments usually don't leave a lot of room for flexibility. If I know ahead of time what exactly we're going to be doing and what it will require of my body, I can plan around that. For example, if I know we are going to be moving from one place to another, I can plan how I am going to get there. Consulting us about changes to the plan is also important. Parking somewhere and then deciding to walk a couple of blocks to a different restaurant  because the first one was crowded really isn't doable for me. If the plan has to change, just be sure to ask your ill/disabled friend what they need to be able to go along with the change.

8. Know that there may be some really frustrating obstacles. A little while ago, I was planning to go to a party at a friend's house which is a little way out of town. I was going in my electric wheelchair and another woman who was coming is also a wheelchair user. We live very close by and the buses going from our area town to where the party was only went about every half hour. Since the buses can only hold one wheelchair to time, that meant that we actually had to discuss who was going when if we both wanted to take the bus. Even then, if we each agreed on a bus time and the bus was just too full, if the ramp was broken or if there were too many buggies that wouldn't get out of the way (it happens, trust me), the whole plan would've been off.  Get frustrated with us when shit like this happens, but please don't make us feel like we're the inconvenience.

Any other thoughts? What do your friends and family to to help ensure you can be included in activities?

Accepting and Adapting

With any chronic illness or disability, there is a lot of adjusting and adapting that we have to figure out. Over quite a short span of time, all of the rules about how my body functions changed. It was overwhelming and I felt out-of-control.  Towards the beginning of this illness, I would sometimes leave the house to go do something, and then halfway through that task find myself quite unsure about whether or not I would be able make it home. I understand my body's new rules now, but that learning took time.

I was lucky to get diagnosed fairly soon after getting sick. For a lot of people it can take years and years before they have any explanation of why things changed so much, so quickly. With the diagnosis came with a sense of understanding about what was going on as well and a sense of hope that I could regain some control over my body and my life. I've had to learn to do a lot of things very differently from how I did them before I got sick.  Nothing is simple anymore; everything takes a lot of planning and adjusting. I've made a lot of changes, but there are certainly still things that I struggle to accept and adaptations that I know I need to make but haven't yet managed to.

While I maintain hope for recovery, I also acknowledge that this is my life right now. I can't sit around waiting to get better and refuse to engage with my present reality. I may get healthy again, I may not. I'm doing everything I can to optimise my chance of recovery but I also need to figure out how to live a meaningful life within the limitations of ME.

A bit more than a year into doing the work of accepting and adapting to life with ME, here is what I've learned:

1. Set realistic expectations. You're going to have to give up a lot of things. I probably have 50% of the energy I had before getting ill and my mobility is probably 30% of what it was pre-illness. That's a lot to give up. But what I've learned is that if I set my expectations/goals too high, I'll be pushing my body too hard and that will lead to even more decline. The kindest thing I can do for myself is acknowledge my limits and adjust my expectations.

2.  Figure out what's important to you and then prioritise. You're not going to be able to keep up with everything you did before you got sick, so figure out what's most important to you and focus on that. For me, staying in work/study was a huge priority. For a lot of reasons (financial, self-esteem, immigration reasons, etc.), I needed to be able to keep up at University and finish my placements. Giving work the vast majority of my energy meant shelving lots of other things: most social activities, my part-time paid work, dating, keeping up with housework, etc. I do my best to remember that these adjustments are not permanent. I fully intend to one day be able to build some of the things I've let go of back into my life, but for now work is my priority and that's okay. (Note: ME is a massive spectrum. I have mild-moderate ME and as such work (with a lot of adjustments) is still possible. For others with more severe ME, their priorities may be feeing themselves, using the loo rather than a bedpan or getting dressed twice a week. Pick priorities that are realistic and meaningful to you, whatever those may be in the context of your illness severity).

3. Let yourself be angry, grumpy and pissed off.  Most of the time, I think I cope really well.  But still, a lot of days I feel extremely frustrated. I get angry that it so much work to get my body anywhere. I get annoyed with myself or with other people when the rubbish hasn't been taken out because I don't have the energy to do it. All these emotions are 100% reasonable, understandable and appropriate. I don't beat myself up for them, but I do make an effort to also take note of all the things I'm grateful for.

4. Use tools and ask for adjustments. If I insisted on doing everything exactly how I did it before I got sick, there are a lot of things that I do now which I wouldn't be able to do. Without my wheelchair, I couldn't leave the house other than to go to work. Using a shower chair means I'm able to shower every day rather than a couple times a week-- I think everyone is grateful for that adjustment! Today is one of the days when it feels like my hands are being smashed, so I'm using Dragon (speech dictation software) to write this blog post. Registering with the student support department at my university means that I can get extensions and all my tutors are aware of how my illness affects my studies. I've had a lot of conversations with the people who manage me on placement about what I need. At the moment, that means working four-day weeks and having more work from home days. You are entitled to have reasonable adjustments made for you at work and in education-- so ask for it!

5. Your understanding of what adjustments and tools you need will grow with time.  When I started on my placement in October, I thought I'd be able to manage five-day weeks. I did for a couple months, but it soon became very obvious that my mobility was quickly slipping away and would continue to decrease if I kept asking so much of my body. I was getting to Friday and feeling like my body was absolutely falling apart. So I told my managers and I put together a proposal for the changes I needed. We adjusted my schedule and I'm coping better now. When I graduate in July and look for work as a qualified social worker, I will have a much better idea than it did a year ago about what I need to make work sustainable. These are lessons I wish I didn't have to learn, but with each lesson I gain a bit of knowledge about how to manage this illness and still live my life.

6. If a particular symptom is disrupting your ability to function and you think it can be medically managed, talk to your GP. I'm finally getting to a point where I feel like I have a bit of  a "medicine toolkit" to manage my most disruptive symptoms. I don't have days when I'm stuck in bed with nausea anymore because I found a medication that effectively treats my nausea. The constant headache I lived with for the first few months of this illness is well controlled now. Medically managing my POTS means that my ability to stand and walk is much better than it would be without my POTS medications. The ME Association publishes an excellent treatment recourses called the Purple Book. My GP and I use it often. You can get them to send a copy of it to your GP here.

7. Think carefully before you give something or someone your valuable energy.  Before I commit to doing things, I asked myself a few questions. Does this really need to be done? Does it need to be done now? Does it need to be done by me? Does it need to be done in exactly this way? Asking all these questions often means that I do less but what I do spend my energy on (particularly at work) is usually more efficient, effective and meaningful.

8. Do your best to enjoy your downtime. ME in particular, but also many other chronic illnesses, means that we spent a lot of time in bed not doing very much. That itself takes a lot of getting used to. I know my first inclination was to feel like all of my resting time was really just a waste of time. I wanted to be getting on with my life, getting stuff done and feeling productive. Instead I was stuck in bed. Over time, I've learned to better tolerate my downtime. I found things that I like listening to or watching when I'm stuck in bed. I've gotten much better at enjoying simple meditations or just sitting quietly with myself.

I'm sure I have a lot more lessons to learn about acceptance and adjusting to life with ME. Hopefully the lessons I've already learned can be helpful for you. What has your time with a chronic illness taught you about acceptance and adjusting? Let me know in the comments section below.

An Introduction

I'm Sally, a woman in her early 20's who is studying to be a social worker and who lives with Myalgic Encephalomyelitis (sometimes-- unfortunately-- called Chronic Fatigue Syndrome). I've found other people's ME/CFS blogs hugely useful in my own experience with the illness, so I thought I'd start one in the hopes that it helps other people.

ME is a chronic nuero-immune illness that causes persistent exhaustion, neurological symptoms, gastrointestinal problems, chronic pain and a whole bunch of other awful stuff. For me, my ME means that on a daily basis I deal with exhaustion, pain of many types, nausea, dizziness, weakness, brain fog, poor sleep, thermostatic instability and sore throats. Alongside those symptoms are my 'what the fuck symptoms' like feeling as though my brain itches. Central to ME is Post-exertional Nueroimmune Exhaustion (aka post-exertional malaise), which basically means that exertion makes all the symptoms worse.

ME is still very poorly understood. There are no widely accepted bio-markers for the illness, so it is diagnosed by its symptom complex and by excluding other possible causes like thyroid disfunction, diabetes, MS or lyme disease. For me that meant tons of blood work, urine analysis and a trip to see a neurologist. I was lucky and got diagnosed with ME very early on in the illness by my GP. Many people spend years ill and see 10+ doctors before finally being diagnosed-- all the while getting more ill because they've not been correctly diagnosed and treated.

There are many different diagnostic criteria for ME/CFS out there, some more narrow than others. The broadest diagnostic criteria (like the Fukuda criteria) are often thought to be too broad and can result in people who actually have illnesses like Lupus or Multiple Sclerosis being diagnosed with ME/CFS. The more narrow criteria (like the ICC or the CCC) tend to focus more on 'classic neurological ME'. Lucky me, I meet every diagnostic criteria I've seen for ME/CFS, so it's pretty damn clear that I have this illness.

There are currently no known treatments that directly target or cure ME. Treatment for the moment is focused on illness management. That involves pacing to use our limited energy wisely (and not over-exert) and symptom management to control symptoms that can be managed using drugs or non-medical intervention.

I got ill with ME in the way that many people do. In late January 2013, I got a nasty virus and I never got better. The acute virus cleared but I was left with what I now know is ME. I never thought that at 21 I'd spend so much time thinking about things like my mobility, my quality of life and constant illness management. But here we are.

Alongside my ME (and probably because of it) I have Postural Orthostatic Tachycardia Syndrome (POTS), which makes being on my feet quite difficult. POTS is when your heart-rate dramatically increases upon standing. My body seems to confuse standing with sprinting and that is very unfortunate.

In practical terms, my ME and POTS mean that I'm able to do a lot less than before I got sick. Keeping up with work is incredibly difficult, my mobility is severely limited and I struggle to find the energy for simple things like making dinner or having a shower. My days are meticulously planned around how to conserve my energy. Besides going to work, I spend the majority of my time either in bed or in the chair next to my bed.

So that's a bit about my ME. A bit more about me though: I have a cat that I love very much, Bella.

(Photo description: A picture of a grey and white cat sitting on a wooden rocking chair with a purple blanket draped over it)

I'm in my final year of a social work degree. I'm currently on placement working the Children's Disability Team. I try to practice from a Radical Social Work perspective, which basically means that in addition to working with individuals I join efforts to challenge and fight the systems that oppress people. I live in Brighton, England. I've spent my life moving around the world (military family) and spent a few years living in India before I moved here. Meditation and mindfulness are important to me, both as illness management tools and general ways of seeing/living life.