Living In A High Rise With Anxiety & Chronic Pain

Living in a high rise can be hell for me! My regular readers will know quite a bit about my anxiety & chronic pain and those that read my #worldmentalhealthawarenessweek post will know a fair bit more about my mental health. Living in a high rise flat makes all of this much more difficult. When I’m having a bad day it isn’t a case of just opening the door & stepping out into the sunshine. Being 11 floors up makes it feel like a full blown mission just to get out of the building. Sometimes it leaves me feeling so trapped I lock myself away for days at a time just to avoid the going out & coming in the block.

I definitely spend more time worrying about going out now than I did when we were in a house. Living in a high rise means you WILL bump into people on your way in and out which stresses me out, especially on bad days. I’m not a people person, I can’t do small talk, I feel awkward and panic about how I look & sound. Knowing I live in a block with some extremely violent neighbours including the guy above us (who attacked the Mr back in March) can make me panic.

The worst part about living with anxiety & chronic pain on the 11th floor is when there are issues with the lifts. If they go out of service I am either stuck upstairs or downstairs or have to push myself through the pain which generally leaves me struggling for DAYS! Our lifts go out of service quite regularly even though they were ‘replaced’ last year.

On Wednesday, after over 12 hours of hearing one lift screeching up and down and people screaming, banging and ringing the bell getting stuck in the other lift the Mr got stuck for 10 minutes. Eventually he got up to the 14th floor & the doors opened, the Mr instantly called the council to try and get them fixed.

I tried to go out an hour or 2 later and found the lifts just wouldn’t open at all so I had to brave going down the stairs with Izzy. Going down isn’t so bad but with a 2 year old sliding down the concrete steps for 11 floors my back was agony by the time we got downstairs. Relieved to have at least got out we wandered off to town and the lifts seemed to be working when we got back.

We ended up stuck for 5 minutes but we were luckily let out again at the 14th floor and the Mr ran up to meet us and help Izzy as she was a little panicked. Fuming the lifts were still in service and trapping people the Mr went off to hunt down the caretakers to try and get the issue resolved. My anxiety was quite bad at this point and I kept going very dizzy. Trying to remember my calm breathing from CBT I slowly managed to calm myself down.

I’d agreed to do the afternoon school run as the Mr needed to wash his jeans (he’s a nightmare and ruins them instantly) so I started worrying about that too. We left quite early so Izzy could try walking to the school & back for the first time, roughly a mile each way. It’s a good job we did as the lifts were still not working. Again we had to go downstairs & I was dreading coming back.

After a lovely walk to the school & back we stopped a caretaker on our way home to check what was going on. He rang through to the council for me and told me the engineers had fixed it in the time we had been gone. When we got to our block though 2 other caretakers were stood at the bottom with a lift open but dropped a good few inches. They told us it should be fine but there may be a step.

Panicking I asked if they were sure & even joked if we got stuck I’d blame them. The lift stated to move ok, no noises until we got to around the 7th floor where the lift stated banging and jumping/dropping. We had another lady and her teenage son in the lift with us & we were all trying our best not to freak out, especially as I had both girls with me. With the lift doors refusing to open and the lift dropping along with ‘Doors opening, door’s closing’ repeating over and over I had to seriously work on controlling my breathing.

The girls were getting quite upset at this point so I tried to calm them down by giving them juice as the lift was getting extremely warm. Suddenly we heard the Mr’s voice asking if we were ok and what was going on. I managed to shakily shout back that we were ok and explain what was going on. We didn’t realise at this point but the 2 caretakers had come up in the lift beside us and had got stuck too. They managed to get out & the Mr asked them to call the fire brigade which they apparently aren’t allowed to do if people are stuck in the lifts!?

The Mr rung the fire brigade instead, he’s not one to hang around when something needs doing & explained there were young children in the lift and people with anxiety. I was sat with the girls at the back of the lift, both of them crying because they were scared. I honestly just wanted to scream myself but I knew I had to keep calm for the girls so I kept them talking instead. ‘That’s daddy, he’s the other side of the doors, it’s ok. You know daddy will fix it, daddy fixes everything’ I told them. Izzy bless her said ‘Just like he always fixes things’. That seemed to calm them down slightly.

Whilst waiting for the fire brigade the Mr kept trying to call the lift to different floors to see if the doors would open at some point. Each time it got stuck I told the other people to ring the alarm so they knew the lift had stopped again. We went up to the 14th but nothing happened, we went back down floor by floor with the lift still jumping & banging as it went. The doors finally opened when we reached the 7th floor with the lift dropped down a good few inches and we all got out as quickly as we could.

As soon as we were out we headed for the stairwell & made our way back up to our floor. I was visibly struggling & the caretaker suggested I stop & sit down but I explained I have chronic pain as well as anxiety so needed to keep going before my legs gave in. Living on the 11th floor of a high rise is not fun! I needed to get us all indoors so I could calm down as the pain was making me shake & struggle to breath along with my heart & head racing like mad. The Mr came looking for us and met us at the 9th floor & took over helping the girls up which was a huge relief.

We got through the door & all collapsed on the sofa, except the Mr. The fire brigade had arrived a minute after the doors opened so the Mr ran down to let the firefighters know what had happened. They agreed the lifts needed turning off until an engineer had been out again like the Mr had been asking the caretakers to do all day. Finally they were shut down & it seems an engineer came out in the early evening as one lift now works but the other is out of service.

I’m extremely nervous about going out again now, more so than before. Living in a high rise is so damn stressful for such a range of reasons. I can’t deal with the pain throughout my body after so many flights of stairs in one day as well as walking. I’ve taken all the meds I can safely take and it’s barely even taken the edge off.  The girl’s are still a bit shaken up & Eva was so worried leaving for school this morning too. I hate living in a high rise with chronic pain & anxiety, things like this just add to it and make me panic and worry more.

The most terrifying part was finding out the alarm isn’t connected to ANYTHING. It simply rings & your best hope is someone will hear it and try to call the lift to get it working again. How can I calmly step into the lift knowing if I get stuck it could be ages before someone hears? We were lucky the caretakers had known & the Mr had been watching for us to come in the block knowing the lifts were playing up & then kept an eye on them. My head keeps going over the what ifs even though I am trying to block them out. We got out safely, we are fine… But what if it happens again?

Do you live in a high rise? Do you struggle with it too?

 

 

 

A Crazy Few Weeks

It’s been a crazy few weeks after I discovered last Wednesday I was entitled to PIP when I woke up and checked my bank account. A letter followed that afternoon. I didn’t quite know how to feel to be honest so I’ve been a bit quiet on the blog. I was quite relieved to have the back payment and be able to sort a few thing’s we needed but at the same time it made me feel quite low. My Anxiety & Depression have spiralled our of control because of Chronic Pain at the moment that I need this just to help me do simple things and make life a little less stressful!

I’ve found it hard to write or join in properly on twitter again which is quite frustrating but I’m feeling a little bit better about everything now and trying to focus on the positives.

It’s been a struggle to get out and about for month’s thanks to anxiety and pain making my life hell. I’ve been able to get taxi’s over the last week or so, something I usually avoid because of the cost. It’s been quite nice to go out and not hurt instantly from walking there or panicking about missing a bus or train. I have a lot of different appointments coming up with CBT, Psychology etc. It’s difficult having to go alone as the Mr has to look after the girls. Now I know it won’t be half as stressful going alone as I can take a taxi and not be late or stood waiting in the cold for up to 30 minutes!

I’ve been able to sort storage for the girls room so they have no excuse for it to be too messy. Hopefully saving my back from hours of tidying. Something I stress about regularly. I feel a bit guilty as I should have a quick tidy in there every day but I struggle to keep up with it all, hopefully now the girls will know where to put everything and keep it cleaner.

I decided to treat myself a little to try and make me feel a bit better about myself. I had my hair cut last week and then the Mr dyed it for me with my usual Schwarzkopf XXL Live Mystic Purple dye! He even did my brothers hair too which made Alex happy. It’s definitely made me feel a little less-self conscious being purple again.

a crazy few weeks

I bought a dinner table so we can eat properly at a table as a family, great for Family dinner’s! My brother Alex has found our family dinner’s give him a sense of normality and family life he missed out on growing up and he loves that. It’s nice for me too as I rarely see anyone these day’s, now it will be much easier so we can do it more often.

Although our day out this half term didn’t quite go as planned as 360 Play in Basildon were full and had to turn us away, the girls had fun in the arcades at Hollywood Bowl. I was a bit gutted but also quite grateful as the noise in the arcades was bad enough! I felt pretty anxious but with my brother there I managed to stick it out long enough for the girls to have fun.

Martyn & the boys came over this week too for a Greek day, it turned into a not so Greek day with only shields and swords being completed.. me playing with bubble wrap and paint may not have helped haha! It was a rather noisy busy day all round but it was nice to have a catch up and the girls obviously had lots of fun.

Today Eva is off at a Disney Princesses and Princes workshop at the Thameside Theatre run by Creative blast. I surprised her and kept the day a secret right up until the last minute when I pulled her Elsa dress out and explained what she would be doing. She was a little confused at first bless her as she thought I had something important to do haha! The lady at the desk explained what would happen across the day and Eva got excited, even more so when she had her dress on! At the end of the day they are putting on a show which we will go and watch 20 minutes before the end of the day at 4pm. The day only cost £22.50 and it was a fairly small group of kids so I’m sure Eva will have lots of fun getting involved with the others!

 

I Thought Being Around Would Make You Feel Worse

I thought being around would make you feel worse. Actual words I never thought I’d hear from a friend. It’s funny what people assume when you have chronic pain. How could having a long time friend message me or visit me make me feel worse than being pretty much ignored for 3 years?

It got me thinking though, is that what people really think when you have chronic pain or any kind of debilitating illness? Do they really think we just literally want to sit alone all day not talking to anyone at all? Do they really believe we will feel worse chatting to someone? As I told my friend, I am still able to chat and have a cuppa. Isn’t that what friends do?

It would be lovely to have a friend round occasionally to distract me from the pain. I live 5 minutes away from our nearest town. I can (slowly) walk to a café or Subway for lunch and a chat. How even sending me messages would make me feel so awful. I’m in pain, not dead!

Yes, I struggle with going out both physically and mentally but it’s a bit different meeting a friend you have known for over 10 years, why on earth wouldn’t I want to at least chat on Facebook or meet up? I chat on twitter a fair bit, admittedly there are day’s I’ll just like everything but even then it’s nice to be included.

To think someone would think it would make me feel ‘angry’ that I couldn’t do stuff like before simply by seeing a friend is honestly ridiculous! If I was in hospital with a broken bone or an infection people would come to check I’m ok so why because I live with this pain day in day out would someone honestly think it was best to just ignore me completely!?

I actually felt worse after that text in all honesty. It came across very much as now she’s hurt herself and lonely I should forget the fact she’s ignored me. Now she’s struggling and needs a friend. Normally I’d be sympathetic but in this situation I simply can’t be. I haven’t been anywhere, I’m always reachable and she regularly drives past and pops up as nearby on Facebook.

If you have a friend with any kind of chronic pain or disability please STAY IN TOUCH!

Go see them, yes it’s hard adjusting but it’s much easier with extra support and a friend by your side. They may cancel plans like going out because they feel rough, that fine. Go buy a ton of yummy junk food or order in a takeaway and sit with them. Watch a film, chat absolute rubbish with them, I guarantee you’ll be making them feel much better and more able to cope with their pain.

 

Discharged From The Pain Clinic

I was discharged from the pain clinic today. After explaining how my pain has eased a little on Gabapentin, I am still struggling to cope with the pain. Which is also causing me to feel horribly anxious constantly.

The Dr prescribed Tramadol instead of Codipar and decided that there’s not much more the Pain Clinic can do for me after he went through the options we had tried. Physiotherapy, Steroid injections, Ten’s machine and the Gabapentin. He decided instead I should have Pain management sessions under the psychology department.

Pain clinic
These sessions are supposed to help teach me about pain, how to pace myself (we all know that’s a huge issue for me!) and cope better all round. These will be group sessions which I am anxious about.. especially as I mostly see elderly people at the pain clinic. They love to point me out and stare.. I hope there’s a few younger people there!

I’m hoping the wait isn’t too long for pain management and CBT. Fingers crossed Tramadol helps improve things as I haven’t been coping well recently. I can’t stop worrying I haven’t done enough or I have too much to do. I constantly feel stressed and struggling to interact even more than normal. Even posting has been an issue, I write then delete. Or I write and it just sits there because I feel my posts are pointless.

I am determined not to let this beat me. Going to sessions around everything else is going to be stressful but hopefully worth it in the long run. I have some awesome people who listen to my grumbling and give me encouragement too.

Have you tried pain management courses? Or CBT? I’d love to know how other’s have got on.

Continuing Gabapentin

Some of you have been following my posts about my Gabapentin trial. I was given enough tablets to cover 6 weeks building up from 1 300mg tablet a day to 6 a day (2 tablets 3 times a day). 

I’ve now finished my trial and had to book a Dr’s appointment to discuss how it had gone and wether or not I should continue. So I thought about the benefits I’ve had since starting them and thought I’d share them with you.

  1. It takes the edge off the pain, it hasn’t stopped it but it gives me enough relief that I can ignore the pain better and do a little more.
  2. Sleep! I do have the odd rough night still and wake a few times but it’s not as often as before so I’m less tired during the day too.
  3. I can get out of bed in under 5 minutes now instead of 20 minutes with a LOT of moaning and I get to drink my morning tea whilst it’s hot haha!
  4. A short walk to down doesn’t leave me crying. (Although I tend to over do it at times which I am still trying to work on..) So I’ve been getting out more.
  5. I’m less snappy! Pain makes me quite angry and emotional/upset and it makes everything seem 100x worse & I stress constantly! You could literally ask me where something is and I’ll have a full blown meltdown but it’s happening a lot less now!
  6. My appetite has come back. I know the tablets are known to cause weight gain but so far so good and I’m eating two meals a day and actually enjoying it plus a few snacks in the evening!
  7. I don’t feel like screaming constantly. The pain still gets to me but not to the point I want to scream and cry like a toddler.

So far I’ve not had many side effects apart from falling asleep early on the sofa when I’ve had a busy day which I’m willing to deal with if it means I can do things in the first place. I’ve been able to a few things I’ve not been able to like joining the Mr or going into town which is only a 10 minute walk away.

I still struggle to carry things so I am going to get a shopping trolley so I don’t always have to take Izzy with me to get more than a few light bits.

After spending so long determined not to be on medication daily having to stick to timings etc and working out I’d be on over 400 tablets every 28 days was a bit of a struggle to accept but being able to do a little more has made me realise following a schedule isn’t so bad!

My anxiety about going out has eased a little now I know I can go into town and make it home without getting so stressed and upset from the pain.

So far I am happy with the results and decided to continue taking Gabapentin especially after spending a day and half off of them and hurting so much all over. I’m definitely benefiting from them which is something nothing else I have tried has managed to do.

Gabapentin - Shake your meds
Have you continued Gabapentin after a trial? Did it help?

Week 5 on Gabapentin

Week 5 - Gabapentin

Yesterday was the start of week 5 & I started taking 600mg in the morning along with 300mg at midday and 600mg at night. It definitely helps me move a little easier although I still can’t seem to do as much as I feel able to at times.

I’m still feeling awful after 2 lots of 10 minute walks, 1 involving a walk around Aldi too. I thought I’d be fine, I felt great in the morning! But by midday the pain was getting too much again and by bedtime I couldn’t sleep from the pain.

On days I don’t go out & I just clean it’s not too bad and much better than before Gabapentin so I know it definitely helps & most nights I am sleeping well as long as I haven’t overdone it during the day.

I’m going to attempt booking a Dr’s appointment this week to get Gabapentin added onto my prescription since it has given me more relief than anything else I’m on.

Has Gabapentin helped you? Are you trying it too or have you been on it a while? 

Week 3 of my 6 Week Gabapentin Trial

At my last pain management appointment I was asked to start a gabapentin trial over 6 weeks starting with 1 x 300mg a day & increasing by one 300mg tablet every Tuesday starting with 10pm then 10pm & 8am and now I am taking them at 2pm as well.

I know some of you are interested in how it’s going so I thought I’d keep you all updated.

Feeling good

So far I have felt some relief & I am now up to 3 tablets a day (900mg). It’s been a huge relief in the morning taking my 10pm tablet and I can get out of bed a little easier. In fact most morning’s I feel brilliant! Although the first few days I did feel a little spacey!

My mood has definitely improved & I don’t feel quite so depressed & anxious constantly. It’s been quite nice throughout the Gabapentin trial so far.

And a ton of other aches and pains 😂😂

Wearing off

By the evenings though it doesn’t seem to give me much relief compared to the morning. The 2pm tablet I started this Tuesday doesn’t seem to have made much difference but then I have also been quite busy this week & may have overdone it.. A little bit.. Or a lot.. 😂 So I have been very moody & snappy the last 2 days!

Lack of sleep obviously hasn’t helped much either this week and was up at very early hours yesterday! I’m still feeling pretty rough but not quite as miserable and snappy.

I’m looking at doing things like buying a shopping trolley on wheels (in purple of course!). That way I can go shopping alone without struggling so much and hurting myself more.

I guess I am slowly accepting this is only ever going to get worse and I need to start finding ways to do what I want to & have some freedom without trying to struggle with doing things the usual way. 

If your a spoonie what things make your life with chronic pain a little easier?

Pain Management – Trying Something New

Pain Management

I had pain management today and was quite anxious about going. It didn’t help that I had to go to the Dr’s first where I didn’t get seen until half an hour after my appointment time but the main reason was that I needed to bring up the fact that whilst my First steroid injections for a little while things had gone down hill since.

After explaining I’ve been getting electric shock type pains all over, the burning and tingling I’ve had, how everywhere seems to constantly ache especially when I’m cold, my memory has gotten worse and I’m struggling to keep my balance amongst other things The Dr decided the injections weren’t going to be helpful as I had 3 injections at once not just one so it should have helped for a lot longer and instead, I was offered a trial of Gabapentin.

Gabapentin trial

I had to think about it quickly.. I don’t want to rely on yet more tablets but I’m struggling so much to cope with the pain. Everyone must be as bored as I am with all my complaining. With the cold weather setting in I’m honestly scared to think I could feel the same as last winter. I decided to give it a go.

Pain management - Gabapentin

I’ve not really read much about Gabapentin up until now and I still don’t know a lot about it but it sound’s like it’s worth a go so tonight I’ll be taking my first dose of 300mg and gradually up the dose over the next 6 weeks & hopefully it will help.

Have you tried Gabapentin for Chronic pain? Did you find it helped much? What dosage are you on or are you trialling it yourself? I’d love to hear from others too and find out how they get on!

Staying On Top

I’ve shared quite a bit on this blog over the last year and I have to say it’s definitely helped, even when I went through a quiet patch the blog was still here being read and liked & commented on and I’ve started to get back into the swing of things again.

Staying on top

I’ve met some lovely bloggers & I’ve noticed myself interacting more and over the last few weeks that has given me a bit of a boost to be honest. Now I’m full of idea’s again and being a lot more organized jotting down notes and dates so I don’t keep forgetting and feeling empty and useless.

On top of all that reading what other’s have gone through or are going through has really been a big motivation for me on bad day’s, if they can carry on & find ways around their challenges I can too!

Sometimes it makes it easier to push through and get things done and sometimes it reminds you to take that much needed break. All in all I think it’s helped me restore some kind of balance and I feel like I’m staying on top of everything again not just the blog.

During my quiet patch I spent a lot of time thinking I was completely useless. My brother especially has helped me see that although I am limited by what I can do, it doesn’t make me lazy, he reminded me of our ‘mother’ growing up and how much more I do for my girls in comparison.

I spend a lot of time pointing out what I can’t do and all the things going wrong but I’m trying to focus on what I can do and what’s going well instead. Instead of feeling awful for taking a break I use that time to blog or chat or crochet so I’m still doing something rather than feeling sorry for myself.

I know there are still going to be days where it is all too much but hopefully with a bit more positivity those days will become fewer.

I’ve started writing notes in notebooks, on post it’s and on our little whiteboard on the fridge to help me remember things & it is definitely helping me be a bit more organized. Perhaps if I finally start using my planner and calander a little better too I’ll spend less time frustrated & forgetting things & getting more done aswell as actually resting when I need to.

Hopefully I can stay on top of things and keep positive for a while! How do you stay on top? What help’s you stay positive?

RUN!

Yesterday was Eva’s first day back at school and of course before we even got to the morning there was a problem. A rather bloody problem!

Eva managed to slide down her plastic steps scraping her foot leaving a long flap of skin hanging off which we had to cut off Sunday night.

We told teachers about her foot the following morning as she wanted to go in, she soldiered on through the day but by the time she got home it obviously needed airing so we will see how she goes over night, she may have to stay home tomorrow to keep it aired.

Apart from Eva’s foot the day started off great! The Mr & I woke well before the alarm and managed a cup of tea before waking the girls. Eva’s written morning routine helped keep her on track and she was actually ready well before she needed to be. Eva struggles to stay focused when getting ready and normally needs constant reminding, this morning I was really impressed with how quickly she got ready, maybe it was the excitement of her first day back at school but hopefully she keeps it up.

The Mr took Eva off to school & Izzy stayed with me as it was raining but as I let her have the TV on she was ecstatic and let me get the kitchen cleaned in peace. By 9.10am my kitchen was done & although my hip was aching I felt like I could do a bit more so started on the girls room. 

Just waiting to borrow a friends hoover

I managed to get it looking tidy after 7 whole weeks! I felt like crying by the end of it but the Mr took Izzy shopping, so I put away the washing and curled up in bed for half an hour to rest. 

Not long after they returned my brother arrived quite stressed and tired after struggling to sleep for days so we got chatting and cheered each other up a bit. I decided to pick Eva up from school as I felt awful that I missed taking her in the morning & do it so rarely now. 

My brother decided to come with me when I mentioned I’d take Izzy. Before we even left he took over Izzy’s trike & wouldn’t let me push it as he knows it really hurts my back & I struggle with the walk. It was lovely to see him thinking about me and enjoying pushing Izzy. They really had a laugh once he got the hand of the handle, weaving along the paths and zooming ahead and we joked with a group of women about Alex needing learner plates as it was his first time.

Run

Once we got to the school I found Eva’s new classroom had been moved again. We had to ask for directions to find her and as soon as she heard my voice and saw my brother she came running out shouting ‘Uncle Alex!’. She was so happy and surprised we were both picking her up.

Unfortunately as I looked up from Eva I suddenly felt extremely overwhelmed by the amount of people surrounding us and began to panic. Alex spotted it straight away and asked what I needed so I told him to just get us out of the gates so he charged through the crowd with trike clearing a path for me to follow.

Once we were out of the gates I was fine and felt a bit silly, especially as its normally me calming my brother down, not the other way round.

We got walking and suddenly I looked up and saw Alex running off full speed to the end of the road giggling his head off with Izzy. When we finally caught up with them they were still laughing & my brother said ‘Sorry about that Izzy told me to run, so I did’. I cracked up. My brother is normally VERY careful with the girls and scared he will do something wrong or hurt them so I was really proud he just went for it & trusted himself enough to do so, his confidence with the girls really is coming on leaps & bounds!

On the way home I began to struggle with the walk and asked them to walk on as I find it awkward slowing everyone down. By the time we got home and checked Eva’s foot the skin had gone white where it had been covered and damp all day so we left it uncovered to air out over night to see how she got on, she ended up staying home today as although it is healing and looks better the skins tightening & scabbing making it harder for Eva to walk and very uncomfortable for her, sofa day it is!

Once we had sorted Eva’s foot and the girls had eaten after Alex ruined a microwave pizza and I nearly burnt the chips trying to calm an upset Eva, Alex sat with them playing with Eva’s doh Vinci set which is of course now ALL over my carpet! 😂😂😂

I really do enjoy watching these 3 play together and love that they now see their Uncle weekly and spend time playing & doing things. It’s hard sometimes not having much family around for them so it’s lovely they have at least one blood relative they are really close to & where I struggled across the day it was nice to have some extra help.

I also really appreciate just how much Alex helped me yesterday especially as I really had over done it with cleaning & then went on to do the school run making things worse & the panic attack on top. Oh and yes I HURT today!

It wouldn’t be a Monday morning or the first day back at school without a few hiccups though aye? As I climbed into bed last night I just suddenly hear Izzy shout ‘RUN!’ in my head and picture them speeding ahead and cracked up.I ended up texting my brother before falling asleep to thank him for his help, his Asperger’s can make it so difficult for him to know what to do in most situations and I was so proud and grateful he had managed to do so well and help so much across the day!

If your little ones gone back to school how did the first day go? Do you ever have panic attacks in the school playground? How do you deal with them?